How I Achieved Wellness Despite Chronic Illness in 2017

Print by The Latest Kate

I can’t believe it’s already the end of 2017! 2017 was a year of change and growth for me. It was the year I left the job I moved to this city for and started a career in a new, while adjacent, field. 

2017 was also the year I started blogging. I originally started this blog to chronical my journey to become a self-published author, and it was my goal to self-publish my novel, Panic Cat, by the end of 2017. 

Alas, the best-laid plans of mice and men… 

My illness ended up taking center stage in 2017, and I had to set my novel aside in order to prioritize focusing on my health. 

But I still was able to utilize my blog well, though it ended up being more of a chronic illness blog than a writing blog. One of my very first posts on this blog, which ended up being my first post published on The Mighty at the beginning of 2017, was on my one-word resolution for 2017, which was well. While obviously no one is 100% successful at something all the time, the word well really framed my year. 

I was able to focus on wellness, despite my chronic illnesses, and I was able to do so in a number of different ways that have not been top priorities other years. I believe the major reason I was so successful at them this year is because I was so focused on being well and making holistic, all around wellness a priority. 

One of my top ways I made 2017 a year of wellness was by prioritizing self-care. I have a print hanging up above my dresser in my bedroom by one of my favorite artists and mental health activists, The Latest Kate (I talked about another of her prints here) that reads “Self-care is smart. Self-care will lead you to success.” Self-care, to me, has been the key to wellness in 2017, because it is linked to so many different things.  

Self-care has not always meant things that are comfortable. It has also meant self-examination and self-advocacy. Wellness has meant prioritizing my health in 2017. 

That kind of self-care is rarely fun. It means at least ten minutes a day of taking pills and making sure I take the right ones at the right times, and at least one, if not multiple, visits, and often phone calls, to the pharmacy each month. It meant many doctors office visits, both to my primary and to specialists. Some brought answers and breakthroughs. Some were frustrating and felt like a waste of six hours of driving. It meant lots of tests, including 4 MRIs. And it meant learning to advocate for myself with medical, insurance, and billing professionals, something I’ve always hated doing but that proved necessary. 

This kind of self-care has admittedly not been my most fun part of 2017. But this kind of self-care is also a huge step in the wellness direction, because it is not always something I have made a priority before 2017. Most of it was my own discomfort and anxiety about standing up for myself and being my own advocate. It also can all just get super overwhelming, and you wonder, especially when the symptoms are relatively managed, if it’s all worth it.

But with the word wellness as my guide, I wanted more than “relatively managed” this year, and am really proud of the strides I have taken for my own health, strides I am sure that will take me far into the new year.  

I have also adopted other self-care habits that I have written about. One of the best, and most intentional, is my daily scripture habit. One of my forces in choosing the word well at the beginning of 2017 is the hymn “It is Well With My Soul,” and my soul wouldn’t be nearly as well as it is without plugging daily into scripture. I usually do it to start my day, as my mornings don’t really feel started without it–it has become as essential as my cup of coffee!–but if I end up sleeping in (I leave for work very early!), I’ll do it after my first shift (I normally work a split shift during the school year). 

Another big self-care wellness habit that is a work in progress, and enables me to do any self-care at all, is learning to shelve guilt. I wrote a post earlier this year on learning to give myself grace rather than guilt, and it is grace that continues to carry me through the year and into 2018. I am not perfect, but grace reminds me that I am worth taking care of. Guilt is a worthless emotion. It does not solve anything, and usually the things I am guilty about, like my illness, are things way beyond my control. Even when I do make mistakes, though, I am working on remedying the mistakes through action plans, rather than dwelling on them through guilt, and then not beating myself up over them. I am still worthy of self-care, even when I make inevitable human mistakes. 

My resolution towards wellness in 2017 has also enabled me to spend much more quality time with my daughter and extended family. Part of being well is prioritising the right things, and one of those biggest things is family. I have had so many special weekends spent with my daughter this year, and those were achieved despite my illness. We were able to do so many things that in 2016 I didn’t have the energy, health, or spoon reserves for. 

We got a zoo membership for my birthday in May and went to the zoo nearly every weekend over the summer. We went to multiple free events, including seeing sharks traveling from an aquarium that came to a local library. We traveled out of town to see family, often without my husband, trips that I never would have ventured on in 2016 with how volatile my health was. I was also able to attend several out of town weddings with my husband, events I had to skip the year prior. 

What made all of this possible was self-care throughout the week, boundaries, and knowing how to allot my spoons. Thanks to wellness, my illnesses are nowhere near cured, but they are a lot better managed. I will be likely taking a huge container full of pills for the rest of my life, but the idea of wellness has helped me come to terms of it. Being well is way more than just physical health, and 2017 has taught me that yes, I can certainly be well indeed, even though I am chronically ill. 

 When I made wellness my resolution, I never imagined that part of that journey would entail, except for a few very rare exceptions, giving up alcohol, likely permanently. When you choose a word, you never really know where it’s going to take you. I’ve been meaning to make a post about my personal decision to stop drinking, but haven’t gotten around to it. I definitely don’t judge anyone else’s choices to, but with my neurological conditions, especially my Chiari and migraines, I decided to try cutting it out, and it has made a big difference in my symptoms. 

Something that is a work in progress, but that I have really made progress on in the last few weeks especially is accepting that I am, and always will be, sick, and that this is OK. This is related to guilt, but there is more to it: it’s an identity thing, which is why it’s going to take more than just this year to unravel. Accepting one’s self as a sick person, in some ways, feels like admitting failure: and from a Christian perspective, almost seems sacreligious, like you don’t believe in miraculous healing. While I do believe in miracles, I also believe, more likely, I have these chronic illnesses for life. But I do believe that just discovering this issue was a major wellness breakthrough, and accepting the fact that I’m sick as part of my identity will be something I work on more in 2018 (and  be incorporated into the word I chose!). 

I could not have achieved any level of wellness without a totally incredible support system. I live fairly far from a lot of my family and friends, and chronic illness sometimes makes me not the best on filling them in on my life, but they are so constant in their love and support. My husband drives me to appointments and has given up so many countless hours of sleep, working night shift and still taking on many extra demands. My daughter is empathetic and sweet much of the time when I am flaring or extra sick. My sister, who lives in Michigan, is the first person I tell when I am freaking out about something medical or have a new test result or a new appointment. She is, and always will be, my advocate and the one who taught me to be strong, along with my mom. My mom has handled many frantic phone calls from me and has given me sage advice and a listening ear, along with lots of motherly love. My mother in law has dropped everything so many times this year to drive 3 hours to help us out. I have friends who are like family who live states and countries away who encourage me to take time for and care for myself. I have support groups, church, and caring coworkers. I have been thoroughly surrounded by my village this year, truly more than any other year. 

In my next post, I’ll be talking about the word that I have chosen for 2018, but until then, I am proud of the progress towards wellness I made in 2017, and I look forward to continuing it into the new year and beyond. 

A Book for my Chronically Ill Soul: Choosing Real by Bekah Jane Pogue

Reading is something I absolutely adore, but it’s something I have struggled to find a place for in my life in the last year up until  very recently.

 I read a lot from an early age, thanks to my mother. One of the earliest gifts my mother gave both my sister and I was a voracious appetite for reading. Mine came slower than my younger sister’s, my illness/disability being part of the struggle. It was a slow journey for me  learning to read. When I was diagnosed with attention deficit disorder (ADD) in the first grade and medicated, my ability to read was jump-started, and so was my love for the written word: one of the greatest loves of my life. 

I would often read multiple books a week: I would get in trouble in class for reading a book under my desk when I was supposed to be doing something else. My love for reading served me well as a student, going straight from a Bachelors in Religious Studies with a minor in English to a Masters in Divinity with a specialization in Youth and Young Adult Development. I was reading a ton: but very little of it was by choice. Most of what I read was mandated  by a syllabus. 

Because most of that reading was mandated, with one exception, a fiction series I really got into my last semester of grad school (the Longmire series), I had really gotten out of the practice of knowing how to choose and stick to a book that wasn’t assigned to me. 

As I’ve talked about a lot on this blog, my 2017 one-word resolution was “well.” Choosing to be well–committing to wellness, even when I cannot choose physical health–was the reason I started this blog in the first place. 2017 is nearly over, and it has taken a very unexpected trajectory. 

Reading has been a huge part of my wellness throughout my life. While I ha’ve not always been “well,” a lot of wellness I did habe could be attributed to reading. Reading was one hobby I’ve always been able to do, even while my illnesses have limited me from many others. I’ve had migraines since before I could even describe what a migraine was (at least early elementary school). I often sat out in gym class because of physical limitations from pain (multiple undiagnosed conditions). But I could retreat on the sidelines with a book, disappearing into a fantastical world where I wasn’t sick. Reading made me well, even when I couldn’t be healthy. 

One reading habit that has significantly contributed towards my wellness in 2017, and I have talked about multiple times on this blog, is my daily scripture reading practice, mainly using the YouVersion Bible App. All of the plans on the app are free, and many are condensed versions of books by various Christian authors. That is how I found one of the most inspirational books I have ever read, as a young Christian wife and mother battling chronic illness: Choosing Real by Bekah Jane Pogue. I was so incredibly inspired by the book that I chose to do a little write-up on it, hopeful that it will help others as much as it helped me. 

A little disclaimer: while many of my posts are broad and applicable outside of a specifically Christian worldview, this book, and most of the other books I will be reviewing in the near future, write from a specifically Christian worldview and are most pertinent to Christians with chronic illness. I understand that not everyone who reads my blog is a Christian with chronic illness, and I urge you to read books that resonate with your own traditions and that can help you view your illness(es) through that perspective. 

I’m not even sure how I ended up reading the Choosing Real Bible plan in the first place. But nevertheless, I really resonated with the themes in Pogue’s seven-day devotional. The main idea of the plan, and Bekah’s book, is to bridge the disconnects  between real life and faith and to make them one and the same; to invite God into the mess of one’s real, actual, day-to-day life, not just the grand moments or the Sunday mornings but the pain and the grief and the hustle and bustle. Pogue posits that choosing an authentic, beautiful life and choosing to walk hand in hand with God are the same. 

A main idea behind Choosing Real that resonated with me is that life was never meant to be easy. If it’s hard, you’re on the right track. Pogue writes about all the hard, scary seasons in life, and about not shying away from these seasons, but choosing to let God lead in them. 

In the hardest seasons of our lives, in the hardest seasons of my illnesses, I can lean into the truth of who I am, which Pogue discusses in her book. When I choose real, I choose to accept who God created me to be: “made in His image. (Genesis 1:26–27) Fearfully and wonderfully made, that is. (Psalm 139:14) We are chosen. (1 Peter 2:9) We are the dwelling space for the Holy Spirit. (1 Corinthians 6:19–20) He loves us even when we mess up. (1 Corinthians 13) Simply because He is our Father and we are His children. (1 John 3:1) (74)” all these descriptors are what truly defines me. I am not defined by my illness! Even on my worst days, I can lean into the truth of who I am created to be as a child of God. 

The truth of the matter is, no matter how sick I get, through flare ups or rough patches or questions over treatment, when my journey gets rocky, I can always return to the core, unshakeable truth of my faith. I believe that my body: yes, my chronically Ill body, was created by God. Pogue puts it this way: “now when moves, career changes, babies, or serious illnesses come, I find comfort knowing I am enough, for the Spirit of the Lord lives inside me.” (74)

My word for 2017, well, is underscored by this beautiful passage on the same page: 

“No matter what happens, my identity will not be shaken. This doesn’t mean I don’t get scared or disappointed or binge on obscene amounts of sea salt chocolate when Plan A is chiseled down to Plan Q; it just means I get another opportunity to walk outside, look into the night sky, and listen as trees rustle their created music. I recognize the tune carried and believe, “Whatever my lot, Thou hast taught me to say, ‘It is well, it is well with my soul.’ When seasons shift, as Ecclesiastes 3:11 assures, He will make everything beautiful in its time.” (74) 

Page after page of Pogue’s book are invitations to persevere, invitations to tread through the hard stuff of life hand in hand with God, in order to reach the good stuff. This doesn’t mean sugarcoating: the opposite, in fact. I love that Choosing Real is underscored with an awareness that the hard stuff is hard. Chronic illness is lonely and isolating and hard. Check out these passages that I highlighted: 

“We can’t reach the good stuff unless we are willing to be aware that the hard stuff is, in fact, hard. Isolating. Maybe solitary isn’t something we need to run away from, but an indication to run toward Someone.” (95) 

“Nothing, my friend, is wasted. God is using every drop—whether from rain or tears or sparkly paper thrown in celebration—to urge us to keep going, keep giving, keep living in today. Keep pushing against the social norms, the false expectations, the racing against the clock to achieve, arrive, and get there. There is no there. There is only here.” (179)

The last important truth I got out of Choosing Real is that part of partnering with God in persevering through real, everyday life is that we can use our pain to relate to and serve others. Serving takes our focus off ourselves and helps us at the same time as it helps others. Pogue writes: 

“When I use my in-the-middle story to come alongside hurting souls, relatability and compassion and the sacred art of giving are born.” (190)

I have definitely experienced this as both a chronically ill educator, and a chronically ill mother. Focusing on my children, both my biological daughter and the kids I work with, takes my focus off myself and puts it onto the kids, and many times I even end up forgetting my pain for a spell. 

My chronic pain also helps me relate to those I work with in different ways. Whether kids are sick chronically or just have colds or flus, my chronic pain helps me relate to them in new ways. I am able to be a light to kids who are frustrated with their own problems because of problems I face with my own struggles with chronic illness. Pogue writes about this beautifully in my very favorite passage from her book: 

“How are you using your light in the dark? Where are you choosing to illuminate how God is authentic and present and working? Even in your frustrations, pains, and disappointments? In your grief and “just because” funks?” (197) 

I am glad that I was able to read Choosing Real, and encourage others to read it as well. It is an uplifting and encouraging read, especially for those with chronic illness, and helped me see how I can live authentically, in my real, everyday life, letting nothing go wasted. 

When Your Chronic Illness Journey Takes an Unexpected Turn 

I have taken an unexpected hiatus from blogging again. I didn’t plan to take a break this time–I had blog titles and topics all planned out, but no words came. 

It turns out, I am not having surgery for my Chiari malformation, at least not anytime in the near future. 

Instead, my new neurosurgeon, who was truly wonderful, patient, and kind, wants to get me referrals to new local specialists in physical therapy, headache neurology, and rheumatology, and see if we can try a multifaceted approach for decreasing my symptoms from those angles first. 

I did not see this coming.
Don’t get me wrong: I am actually very happy about this development. Which is weird at the same time. I had built up this progression in my head of how things would go: my migraines and other symptoms, which I have had my whole life and are partially due to my Chiari, the worst of my multiple chronic conditions, are getting worse, so clearly I would need to have surgery. I didn’t want surgery, but I had finally accepted it, because I figured that was the only option. 

Except then, I spent an hour talking to someone who had dedicated his life to studying Chiari malformation and other disorders of the brain and spine who is telling me that at this point in time it is not my only option. 

Looking at my MRIs was reassuring. I don’t have any blockages in flow or any syrinxes on my spine. For those of you who don’t know anything about Chiari, that means two things: 1. that the surgery isn’t 100% mandatory at this point in time; and 2. that it might not even be effective at this point in time. 

At the beginning of the appointment, when I could tell things were going in the “no surgery” direction, I felt like screaming and totally shutting down from anything the doctor had to say. 

But the more I processed it, the more what he was saying made sense. He said he treated his patients like family, and I believed him. He was trying to spare me from a painful surgery and long recovery he didn’t see cause in. He wanted to try every angle before rushing. And the only reason I was so opposed to it is because I had convinced myself surgery was the only option. Even though I truly didn’t even want that option to begin with! 

There is still obviously a long journey ahead. Part of me wanted the surgery because it was a “quick fix,” even though I know from research it is anything but. Chiari is not a cureable condition–even with surgery, all that can be done is slow down progression of symptoms, so if that can be done in non-surgical ways somehow, I am more than open to exploring these new paths in the desert. 

With any new journey comes new emotions to unpack as well. Some of the new feelings I’m exploring are feeling unworthy, “not as sick” now that I don’t need surgery right now. Will other people think I’ve been faking my conditions the whole time now that there’s no imminent surgery on the timeline? 

What I’ve been trying to remind myself of is a few things. One, my worth does not come from my health, lack of health, or people’s opinions of my treatment plans. And two, I am my own worst critic of all of those things. My support system, both close and farther removed, just wants the best for me. They are happy for me that I’m not having brain surgery: and I’m happy, too. That door isn’t closed for good, and I will be revisiting the surgeon in six months to a year, but for now, I will be exploring the journey at this new vantage point. 

Building a Strong Support System with Chronic Illness when you Move Away from your Hometown 

Once upon a time, there was a little girl who really loved her home. Even when she was vacationing at some of her favorite spots on Earth, she still wanted to always go back to her “yellow house.” 

College was a rough transition for the girl. Theoretically, she always wanted to leave home and spread her wings, and she didn’t like any of the colleges close to home, so she selected a small, liberal arts school two and a half hours away. But until a few months in, she was miserably homesick, and even very seriously considered transferring out and attending community college for a couple years. 

But the girl ended up staying in college and making lifelong friends: and one friend in particular, who, the very beginning of her second year of college, she began dating. The thing about this boy is, despite going to school in her home state, the girl ended up falling in love with one of the few out-of-state students at her tiny liberal arts college. 

As may be super-obvious from that story, I am that girl, and I’ve lived in Ohio, about five hours from my hometown, for 4.5 years now, ever since I was married and we moved down here for grad school. We live 4.5 hours on a trafficless day from my family, and three hours from my husband’s. 

In 2017, it’s hardly uncommon for young adults to move away from home to pursue new opportunities, though it’s rarer in the midwest, where I live: many of my co-workers and others I meet grew up in this area of Ohio, and I’m one of the only “outsiders.” That means that while other coworkers talk about their families being close by and having families to help with things like childcare, I’m one of the only ones whose family is hours away. 

I’m not going to sugarcoat it: When you’re chronically ill, especially a young, chronically ill parent, living far away from family and established, longtime friends is often excruciatingly hard. When we originally moved here for graduate school, we weren’t sure where we were going to end up, and, to be honest, we are never fully sure about that. Life is a moving target, and we right now intend to go where life takes us, one step at a time. 

What we do know right now is that moving doesn’t make sense. We have unexpectedly grown roots in this area. We both are in jobs we are excelling in, I have found a supportive church family, and my daughter is thriving at her school. Plus, my medical network is here, important until I get the “Will I or won’t I have surgery question figured out.”

So, as long as I’m chronically ill and find myself in a place where I’m far from my hometown support system, it is crucial for me to build a support system in unconventional ways. This is something I have done overtime: some intentionally, some accidentally, but it has been something that has really helped me thrive and be well in a place that isn’t particularly close to my parents or in-laws. 

My first line of support is my little family, which is my husband and daughter. I have made my home with them, and we are making a new life, new roots, and a new story together. Additionally, those roots extend long distances, thanks to the wonders of modern technology. 

I am so eternally thankful to have the husband I do to walk this path of chronic illness with me.  My husband is my rock through the storms that chronic illness throws at us, and has taken the “in sickness” parts of our marriage vows incredibly seriously since the very beginning of our relationship, even whilst knowing “in health” would likely never be a reality with me and my chronic illness. We got married young, at 21 and 22, and heard that our young marriage would hold lots of challenges, and of course, a chronically ill marriage holds its own challenges. I know my illness affects him in its own ways: illness affects both the ill spouse and their partner. But we are able to talk about it, and he always continues to support me and be there for me, even when I have no clue what I need (which is frequent). We’ve been together over 7 years now and married for 4.5. Life has thrown a lot at us, but our partnership is strong. 

My daughter is three and a half, and she is able to say that her mommy has Ehlers Danlos Syndrome  (even if she can’t fully pronounce it). My daughter is an incredible part of my support system, because she keeps me joyful, and she keeps me grounded. My role as her mother is always more important to her than my role as a sick person. She knows I’m sick, but that matters less to her than the fact that I’m her mom, and there’s so much power in that to me. When I dedicate special time to spend with her, I’m able to forget I’m sick for a while, because I can focus on her. Don’t get me wrong: I still have limitations. We spend a lot of time cuddled in bed together (I will write a post on chronically ill parenting of a preschooler in the near future). But for the most part, we’ve found a groove. She’s not perfect: she’s three and a half, and she has her tantrumy moments where I certainly don’t forget that. But she’s also a sweet, empathetic kiddo a lot of the time. 

After my husband and daughter, the next most important thing that is absolutely crucial to my unconventional support system is social media, specifically Facebook and Messenger. People–especially non-chronically-ill people in certain circles–tend to really bash what they see as the “overuse” of technology. Facebook especially tends to get a bad rap. Every other week it seems like I hear someone talking about deleting their Facebook. 

On one hand, I 100% believe that you have to do what you have to do for your own mental health and wellbeing. That being said, Facebook is a tool, and like any tool, it has positive and negative applications. 

I use Facebook to keep others in the loop about my illnesses. Honesty is incredibly important to me. I give updates on my appointments, prayer requests about upcoming dates that are significant due to my condition, and share my blog and The Mighty posts. I don’t post about my illnesses exclusively: they don’t define my life, and I also share other stuff (mostly pictures of my daughter). I have been amazed by the outpouring of support I have gotten through Facebook, often through people I wouldn’t expect. I have a great community of people who stand in the gap for me and help hold hope for me when I can’t. It also helps inform the people I see regularly, so that when I see them at, say, church, they know what was going on in my week, and know what to ask about. A lot of times a church member or coworker will tell me they saw a Facebook or blog post and are praying for me and supporting me, which is really great. 

I also use Facebook messenger as a primary mode of communication with many out of town friends and family. It has helped me stay close with many friends that live in other states or even other countries. I love Facebook Messenger because I can write back at my own pace, and so can they. I can use it to carry on a conversation immediately, but I don’t have to. With some friends and family, we write long letters back and forth, with days in between; others, short sentences, carried on in immediate conversations. Even though many miles exist between us, Messenger helps bridge the gap and reminds me that I have so many friends that care about me: and helps me care about them and be a good reciprocal friend too. 

Messenger has also helped turn acquaintances into friends. There are several wonderful, strong women on Facebook that I was friendly with in person at several stages in my life (a few in high school, a few at college age) but I was never particularly close with. They read my blog and statuses, and messaged and commented that they were going through their own chronic or mental illness journeys. They have been wonderful sources of mutual support, and my only regret is that I did not become friends with them sooner. 

And then there are my online friends and support groups. I am blessed to have several wonderfup support groups full of online friends: some specifically geared towards chronic illness, some not. These people have become dear friends over the months and years, and an exceptional source of mutuality and support. They may live far apart and I may only know them through my computer, but they are nevertheless essential to my support system. Since many of them are chronically ill as well, many with the same illnesses as me, they understand my struggles in a different way, and therefore can help me in a different way. 

I’m not perfect in a lot of ways, of course. Sometimes, relying on technology means I mess up, and drop off with people who really care about me, like my mom and little sister. I know she is so much better at checking on me than I am on her, and I know I can be accidentally hurtful when I leave her out from my life. She is so caring and reads all of my blog posts, and always follows my health, but I don’t always do my best at updating her personally. 

Technology makes me lazy sometimes. It means I do group updates instead of talking to people individually. Again, technology is a tool. I want to tell as many people as possible, but I end up leaving those closest to me out of the loop. So to those I do make feel worthless: I am so, so sorry. 

My family is of infinite worth to me. My sister is my best friend. We fought like cats and dogs growing up, but I miss her every day now that she lives far away. She cares about me so much, and she makes such an effort to help me out. Technology helps us talk, but I know I underutilize it. Ahain, a lot of it is laziness, and me not being intentional. I need to fill my mom and my sister in first, and that’s something I need to start making a habit of. I think that’s something all chronically ill people can learn from: know who your close circle is, especially if they live far apart from you, and fill them in first, before updating everyone else. They shouldn’t have to hear your updates through the technological grapevine. 

So the next time you see someone on their phone, especially a chronically ill person, chances are, they are not being rude. It is a source of support, love, and guidance to many of us. It is an anchor to me: it is how I get support from my mom and my dad and my little sister and my in laws and the rest of my familh, from God through my Bible app. It does so much more than just aimless scrolling. 

I am also thankful for out of town relatives and their willingness to be flexible and go the distance for us, even when it’s hard. My parents and in laws frequently step up to the plate, and have watched my daughter for weekends and vacations and other extended periods of time to give us a break. The ways they have helped us have bridged the distance considerably, and we couldn’t make any of this work without them. 

Other people locally have made this new community feel like home, and stepped in in emergencies. In situations that have felt dire, the most wonderful local people have stepped in and provided practical help, childcare, and love, making a place that was initially strange and large feel a lot more like home. I don’t talk to all the parts of my support system all of the time, but it doesn’t make me any less grateful. 

Outside of my phone, my two major local support networks are work and my church. I wrote a post earlier this year in church shopping when chronically ill, and I plan to write a follow-up post soon about how finding the right church was a hugely important part of my chronic illness support system. 

Finding the right church helps in a multitude of ways. For one, while my online support system is vast and extremely helpful, living in one’s phone can be very isolating. For me, it’s very important to get out of the house and have in-persom networks: it helps me feel much less alone, much less isolated, and even less sick. 

Since I don’t have family in town to visit, a church helps meet this longing for close social networks. The church I’ve found has an array of social offerings that were easy to get plugged into. I quickly found a great Sunday school class, Sunday worship, and midweek classes for my daughter and I. One of the best parts for a chronically ill person that I’ve found is my church is extremely nonjudgemental when i miss a week or several weeks in a row, or if I need to sit in my car while my daughter attends her Wednesday night class instead of going to my Bible study because I’m feeling too fatigued and ill after work.

 They’ve also been accepting and non-judgemental when I need to sit during the standing parts of the church services. I have found an environment where I am able to be open about my illnesses, and have found myself surrounded by a community that prays for me and supports me along each step of my chronic illness journey. I definitely would feel a lot more alone without my church family. 

Finding a fulfilling job that worked with my chronic illness and also allowed me time to write, rest, recover, and self-care has been absolutely critical. I kind of fell into this job by accident, because the shift–a split shift, with a shift early in the morning, a break in the middle, then going back in–worked with having another job. I quickly decided not to have another job, my illness being a big factor in thst, and to completely switch fields over to education and childcare, and it’s been such a worthwhile switch. 

Being in the right career helps me get out of bed each morning, even when I’m not feeling well. Seeing “my” 50+ kids I work with never fails to put a smile on my face. My work feels meaningful to me, which helps distract from pain and other symptoms. While I’m at work, I often forget I’m ill, which is huge. 

Moving back home is never fully out of the question, nor is potentially moving closer to my in-laws, or somewhere in between my parents and in-laws. But until then, I am thankful that I have other ways to stay in touch with the many people that support me, love me, and make my life full. God did not intend for me to go about this chronic illness journey alone, and luckily I have wonderful people in my life, both near and far, so that I never have to. 

Holding Out Hope when the Chronic Illness Journey is Long 

One of my favorite metaphors for life, however cliche, is of life as a journey. Having a chronic illness, especially young, is its own journey, and sometimes the legs of the journey can be longer than expected. 

Yesterday, I had one of those times. I had a first appointment with a neurosurgeon two and a half hours away from where I live to meet about my Chiari Malformation. I had built up this appointment in my mind as the End of the Road, but it ended up being an overly quick appointment. The surgeon seemed  very competent, kind, and well versed in Chiari, which was great, but he wanted to be cautious and order more specialized tests before scheduling surgery. Since I had gone in expecting a surgery date set, this was initially a huge disappointment, even though logically I know I need the testing and this doctor is exactly the kind of doctor I want: the kind that is willing to be cautious and order the right testing before jumping into a procedure.

I know firsthand how sometimes my desperation for answers and timelines and treatments on my chronic ilness journey leads me to cling to things that are not best for my overall health journey. In July 2016, for instance, I thought I had finally reached the end of an arduous diagnosis journey, and I was diagnosed with fibromyalgia. But it turned out to be a misdiagnosis. After dealing with that, and treatments that ended up being counterproductive to the Ehlers Danlos Syndrome I really had, I am slowly learning to embrace the journey and the fact that, since these are lifelong, incurable illnesses, this can’t be anything I can rush. It needs to be the right steps on the journey, and I need to be patient so that the journey can take those right paths. 

As validating and comforting as answers and timelines are, the rational part of my brain reminds me that I don’t want answers, or timelines, if they’re the wrong ones. 

One of my favorite stories on The Mighty is written by fantastic contributor Nikki Albert. It was written just over a year ago, and I believe I read it when it was first published, when I still thought I had fibromyalgia, the topic of the story. In the article, titled “Why Those of Us with Fibromyalgia Should Embrace Being Turtles,” Albert writes about the importance of a slow-paced, turtle-like lifestyle for those with fibromyalgia: which certainly applies to those of us with similar chronic illnesses as well. 

Albert discusses how the world can often seem intensely fast-paced, a chaotic rat race, but that those of us with chronic illness can and should, for our own health and wellness, choose a new way to live. This “way of the turtle ” is slower paced, filled with self-care and not comparing oneself to healthy people. She also talks about the #1 lesson I learned in 2016: not basing your worth on what you do, but rather who you are. And since I practice a Christian worldview, for me this means basing my worth in who I am as a child of God, not on any earthly accomplishments. 

Not only should I embrace being a turtle and pacing myself with everyday activities, I also have to remember that the pace of chronic illness treatment–the pace and length of this chronic illness journey I’m on–is going to be different. 

I have sometimes wished through the years, on the hardest days of my chronic illness journey, that I had something “more serious”: that is to say, something that sent my medical teams into what I see as more action. I haven’t thought this because i think those illnesses that are treated like emergencies are easier: on the contrary, I am sure they are extremely difficult and full of challenges I can’t imagine from this vantage point of having never experienced them.

 All it means is that on those hard days, I sometimes long, if I have to be sick, for an illness to which there was a clear treatment plan, and treatment was done expediently, rather than at the turtle’s pace life with Chiari Malformation and Ehlers Danlos Syndrome Hypermobility Type often feels like.

But some of the best advice I’ve gotten this year is that “nothing good can come from dwelling in ‘what ifs.'” I do not live in some hypothetical alternate universe, and never will: I live here, in this world, in this body, and this is the hand I’ve been dealt.

So, my advice to my fellow “turtles” on a long, winding chronic illness journey, that seems to be just getting longer day by day, is this–which is also my advice to myself: for a long journey, pack hope. 

Hope, as I’m choosing to use the word, means living with the faith, expectation and trust that things will continue to progress and continue to get better, even when they seem very hard. Since I am a Christian, my hope comes from believing there is an author of my story–God–who is much bigger than me. 

After my initially-disappointing appointment this week, I am choosing to pack this new outlook for the journey. So what are some practical ways I am choosing to pursue hope? 

In a recent post, I wrote about my scripture habit that helps me as very intentional self-care. I use the YouVersion Bible App and have read through many, many of its devotional plans. One of the most helpful features of this app is you can search for plans using a keyword. So when I was specifically searching for plans based on the life of Joseph, as I talked about in my last post. So right now, I am reading through as many plans about hope as I possibly can. I cling to all the scriptures and promises I can about hope. I also am reading reassuring quotes about hope, and these all serve as lights for my journey.

Another helpful way of keeping hope, for me, is looking over the topography  (using the journey metaphor) of my illness journey so far and seeing how far I’ve already come. A popular phrase I hear a lot in parenting is “the days are long, but the years are short.” This is true in my chronic illness journey as well. Certain days seem unbearably long, but the amount I’ve journeyed in just a year and how much more I know now is impressive. And that gives me hope that a year from now, I’ll be looking back on this leg of the journey and have a brand new perspective. 

A third way I am choosing to pack hope for my journey is by not traveling alone. My next post for my blog will likely be about building an intentional support system with chronic  illness when you have moved away from your hometown. I need to be intentional in sharing my journey, which is why I am very public about my health struggles, and talking honestly about it with friends and family. Isolation leads to hopelessness. My support system carries hope for me and helps me carry this hope for myself. 

Finally, my fourth tip I’ve discovered in the few days I’ve been choosing to intentionally embrace having hope along the journey is to smell the flowers along the way. I am learning to enjoy the little things in life more, instead of obsessing over things like what’s to come next on my treatment journey. Living in and relishing the beauty of the day to day helps give me hope, too  (more practical posts on how I do this are in the works!). 

Notice that never once in this post did I say a chronic illness journey is easy, nor is it something I believe you have to be Pollyanna happy about. I can’t always choose where I’m called to journey with my chronic illness, but I can choose what to pack. And starting now, I’m packing hope.

 Avoiding the Comparison Trap As a Chronically Ill 20-Something 

Wedding selfie!

This weekend, my husband and I went to a wedding near his hometown for two of his high school friends. Some of his friends are people I haven’t seen since our own wedding four and a half years ago. 

My husband’s friends are a group of generally very hard-working, successful people, and I love them all a whole bunch. They are a lot of engineers, pharmacists, and scientists, and already doing very well for themselves in their early to mid 20s. 

At gatherings of people that know each other well but haven’t seen each other in quite a while, the same questions are bound to come up over and over. “How are you? What doing now? Where are you living? Where are you working?” And you, in turn, ask similar questions back. If you know them and are already connected on social media, as I am with most of the friends I saw at the wedding, you may have some familiarity with some areas of their life, so the questions may become more targeted.

 I answer a lot of questions about my 3 and a half year old daughter, because I am one of the only parents in our friend group. I am always more than  happy to talk about her. I also end up talking some about my health, because of course I am open about my struggles with chronic illness and my upcoming appointments and potential surgery. I do my best to be honest about that as well, as honesty and candidness are big things I pride myself on as an advocate for chronic illness: though it’s never nearly as fun as the little one’s antics. 

Sometimes, during these exchanges, I can’t help my mind from spinning and starting the comparisons. “They’re so much more successful than you,” my anxiety will try to say, trying to spin me into that negative thought trap and out of having a good time. “If only you were healthy and actually working full-time year round. Think about how much more you could accomplish.”

One’s 20s is a fragile time in life to fall into the comparison trap, no matter what their health is. But when you add chronic illness, it can feel like the playing field is more uneven: and make you feel like even more of a failure, if you let it. 

And comparison traps aren’t only present with chronically ill people being tempted to compare themselves to healthy people (or people they think are healthy: we never truly know everyone’s personal inner struggles). 

And it happens both ways. Chronically ill people can see someone who has an illness and doing awesome things with their life–advocating for the cause, working their dream job, heck, even just wearing jeans every day, and another chronically ill person wonders why they can’t do the same things. Sometimes, this unfortunately turns into jealousy and attacking other chronically ill people seen as “more successful” or even “faking it.”

 Often, I see this taking the form of internet commenters complaining about a celebrity or even just a normal writer who is able to hold down a full time job despite their illness. “Wouldn’t it be nice to work. I can’t even get out of bed thanks to my xyz illness.” At its most toxic, this turns into infighting in the chronic illness community, a chronically il dog chasing its own tail or, even worse, accusing others of “not being sick enough” to “truly” be chronically ill. 

And on the other side of this, those of us who are still working can feel like we aren’t ill enough, like we live every day as fakers, despite our daily pain and diagnosises, and that people are just waiting around every corner, waiting to call us out as the “not sick enough” frauds we are. Not sick enough to be chronically ill, not healthy enough to be successful; the comparison trap does its best to make you feel like a failure in whatever realm you dwell in. 

Something I try hard to remind myself, and that I am lucky to have wonderful people in my life reminding me, is that there is no place for the comparison trap: it’s worthless to compare one’s own journey to someone else’s. 

Everyone’s journey is different: and everyone’s journey is important. When we are chronically ill, our journeys might look slow, and our steps might seem small: but every day I remind myself that life is not a race. Progress is still progress. Just because I had to set aside some of my dreams, like self-publishing a novel, so I can focus on getting brain surgery doesn’t mean they aren’t going to happen. Just because my career doesn’t look like the trajectory I saw myself going on when I entered graduate school doesn’t mean it’s not a worthy, necessary job that touches lives of children every day and makes a difference in the world, while at the same time allowing me to be part time during the school year and focus on my health right now. 

I wrote a post a little while back about how my scripture reading habit has become essential to my self-care. In my daily scripture reading practice, I often go through seasons where I gravitate to certain characters or scriptures that help me in my current season, and end up reading every single different perspective I can on them.  

Right now, the Biblical character I’m really resonating with is Joseph–the one with the multicolored coat, not the husband of Mary. Joseph had big dreams: and big struggles. He went from being the favored son of his father to being thrown into a pit by his brothers, sold into slavery, thrown in jail: and eventually made a remarkable recovery to be the second in command in all of Egypt, saving his entire family in the process. 

But Joseph’s journey didn’t happen overnight. It took approximately 22 years for him to go from pit to his brothers bowing before him in the palace! 22 years of suffering is a long time…and while I don’t relate to the exact kinds of suffering Joseph went through, and can’t imagine the horrors, what I can relate to is holding suffering around in my body for years and years, clinging to hope, wondering if it’s still ok to dream when I feel like my body might give out on me at any minute. 

One of the best bible study plans I’ve tread about Joseph is The Joseph Challenge by Dr. Kanayo Dike-Oduah, available for free on the YouVersion Bible app. On the last day of the plan, Dr. Kanayo writes, “remember that your life is important. You are necessary. Your God-dream, God-vision, God-idea and purpose is what someone else needs.” We weren’t designed to be all the same. Chronic illness sucks, and I’m not one to say “everything happens for a reason,” because some things are just awful, pure and simple. Bit what I do believe is that God can take everything, even the crappiest things, and use them for God’s own glory. And I believe God gives dreams to everyone: healthy and ill and in between. 

The thing about dreams is that they take time, and everyone’s dream operates on a different timeline. Struggles don’t mean dreams won’t come true: in fact, if you look at most success stories, there is a great deal of struggle and pain in all of them. 

The only person I want to compare myself to is…myself. Am I at a different place, a better place, holistically, than I was a year ago? I can answer that question with a resounding yes. Sure, my symptoms are getting worse: but my symptoms do not define me. 

So much more has changed for the better. I made my resolution word for 2017 wellness, and we near the end of 2017, I am generally so much more well. I have better self-care practices and better self-esteem. I love my new job and new church. I spend more time with my daughter and husband. We are working towards medical answers and treatment, and I have accepted that my diagnosises are a part of me but don’t define me. I’m writing more and have a solid bible reading habit. I’ve cut out negative habits. All in all, that progress, progress that I am sure will continue, despite inevitable bumps on the road, is the only comparison I need.

Living Life Whilst Waiting for Medical Answers 

This post has sat, a quarter-written, in my drafts folder, for over a week now. It’s not the first time a blog post has languished, but it may be the first time that avoiding a post has scared me away from writing entirely. You see, I am in a season of waiting. Waiting for answers, waiting for comfort, waiting for surgery. Waiting for God. It is not a season I like, and it is not a season I, to be totally blunt, particularly want to write about. 

If I could, I would just neatly push the delete button on this draft, let time and life happen, let this season pass by at its excruciatingly slow pace, let the answers finally come, this season finally pass, and never write this post, so that there would never have to be a record of this, my very least favorite type of season. 

But, if you’re anything like me, this is the kind of post you probably need most, because this is probably the kind of season in your life you probably live–and dread–the most. 

My life as a chronically ill person who is simultaneously a lot of other things  (educator, mother, wife, family member, friend, church and community member, etc) involves living in a lot of in-between areas.

 In a previous post about chronic pain, I talked about how, if we all have a stoplight of pain–red meaning total, disabling pain that means we stop everything do, and green meaning nearly no pain–I spend most of my days on yellow. I am at “slow down”: clearly aware of my pain, but, with medication and solid coping strategies, able to go to work, parent my child, and spend time with family and friends. However, that pesky pain of mine is always a constant companion and reminder. 

Just like my days are spent in the yellow, in between zone of pain, much of my life is spent in another in-between zone that is less-than-pleasant: a waiting zone. There is no fast forward button. Unlike on a TV show or in a novel, most of my life takes place in the uninteresting bits. 

It’s crazy for me to think about, because it consumes so much of my life now, but last year at this time I didn’t even know I had Chiari Malformation or Ehlers-Danlos Syndrome. Life has changed in so many different ways since I got my diagnosises, but one thing that hasn’t changed is then, just like now, was a period that was fraught with the tension of waiting for medical answers. 

Most people with chronic illness know that the diagnosis process can be frustratingly slow. It can take months or even years to find out what is wrong with you. And sometimes, you can get an answer, and later find out it is the wrong answer (like what happened with me and being misdiagnosed with fibromyalgia.) 

Getting the right diagnostic labels was such a relief to me, but what I didn’t expect was that there would be new seasons of the same kind of nervous, anxious waiting once I knew what illnesses I had. No longer is the question “why do I have these horrible, crushing headaches and neurological symptoms?” the first one on my mind, sure. I know they’re owed to my Chiari malformation. 

But answers aren’t treatment. I have been waiting for months to get in to finally see a specialist to find out whether or not I will need brain surgery for my Chiari. 

One of the other difficult things is that one’s own acceptance journey and their medical red tape journey never seem to travel at the same speed. Chances are I would already have had the brain surgery now if it wouldn’t have been for my own anxiety and waffling over it. 

But now that I’ve finally accepted that I do most likely need surgery and that the risks are worth the potential rewards, since my symptoms are so severe and continually escalating, I have to wait for my treatment schedule to be on the same page as I am emotionally. Sure, if I would have booked these appointments and done all of the legwork earlier, I could have had the surgery now, when I was emotionally ready, but I wasn’t in the place of acceptance before to take those steps to get the treatment. So it’s a challenge for sure. 

I started drafting this post on a Wednesday, the day after I was released from an emergency room trip that yielded absolutely no answers. Today is Saturday, over a week later. The biggest thing that has happened in that time is that last Friday I finally was able to schedule an appointment to see a neurosurgeon specialist for my Chiari, three hours away. 

If this was a TV show, we would only see the highlights, and this whole 2 week period, from emergency room visit to specialist’s office, would be one episode. But this is real life, and there is life to be lived in the in-between, in the tension of not having answers or proper treatments or timelines. There are questions to be answered honestly when parents at your education job ask you how you’re doing and you have no new news to give them. There are frustrated prayers to pray when you cry out to God, begging for a little peace among the pain as you try to wait the best and most faithfully you can. 

I am looking forward to Wednesday, and the appointment with my neurosurgeon, an appointment that has taken months to schedule, like it’s Christmas. But I am nervous about it too. What if it goes badly? What if they can’t help me? Or won’t? What if it makes all of this feel like I’m back at square 1 with treating my Chiari? 

In the meantime, the best I can do is push the “what ifs” aside, pray a lot, trust God has a plan for all of this, lean on my support system, and try to remember that there is life to be lived in the wait. Unlike on a  TV show, in real life the little moments matter. Each job shift where I get another opportunity to impact a life of a child. Each night I get to snuggle up with my daughter. Each time I get to go out on a date with my husband. These times are precious, and they deserve to be treated as such, not consumed by the worries of living in the in between. 

So I wait, and I muster as much peace as God can possibly give me for the wait. The wait may be hard, but there is life–beautiful, full, worthwhile life–still to be found in it if one looks hard enough.

When Things Need to be Pushed Back for My Health to Come First 

So much of life is about prioritizing. There is limited time in the day, and while I believe it is possible to accomplish a lot, I don’t think a lot can often be accomplished at the same exact time. Sometimes, things have to be set down, often unexpectedly, so other things can be prioritized. 

But that doesn’t necessarily mean saying “no” to things. Often it means saying “not yet.” You can feel powerfully committed a goal, and realize it’s not the right time to pursue said goal. It can be very painful to admit to yourself, and even more painful to admit to others, that you’re going to put something on pause in order to focus on something else. Maybe you’ll even feel like a failure: even if you know in your heart, 100%, that it’s the right thing to do. 

This is the place I am right now with the novel I am planning on self-publishing.  I 100% am passionate about self-publishing my novel project. Panic Cat, which will be the first in a four part series, seeks to raise awareness and destigmatize issues of clinical anxiety and mental illness and reframes my protagonist’s chronic and mental illnesses as her superpowers rather than her weaknesses. It is a project I am incredibly passionate about, and I know I will continue to pursue its publication with vigor in 2018.

However, my goal up until recently was to get it self-published by the end of this year or the beginning of next, and I now see that the goal, though admirable, needs to be set aside so I can focus on something that is more pressing right now: my health. I am waiting to see if I will need to have brain surgery for my Chiari Malformation at the end of this year. Meanwhile, I am focusing on that, and on my body and symptoms and management, while also having my hands full with continuing to thrive to the best of my ability in my work as an educator, in my faith as a young Christian woman, and in my family life as a devoted wife, mother, daughter, sister, and friend. 

It is not an easy or natural thing for me to press the pause button in my life. I graduated from college a semester early. I completed a master’s degree at 25. I was married and had a baby during that time, and was hired into my dream job. Check check check. My goal has always been to climb ladders, check off boxes in my personal and professional lives, get things done as quickly and well as possible. And then…i got sick. I’m not going to sugarcoat it, because in a lot of ways, sickness and disability are horrible. But there is an upside, and that is that it forced me to slow down and focus on what is truly, truly important. Illness forced me to prioritize. And right now, my priority is my health. 

The thing about prioritizing is it sometimes feels like quitting, even though it’s not. Sometimes it feels like failing, even though it’s actually the opposite. Sometimes I worry that this means I peaked at 25, and my success is downhill from here. But then I have to remind myself that there are so many different definitions of success. And knowing myself and my body and my own limits and needs is just as successful and inspirational as publishing a book. I am young, and have plenty of time to meet other goals. But I only have one body, and I need to focus on treating it as well as possible. So it needs to be my priority right now. Everything in its own time.  

To my readers who are looking forward to reading my novel: thank you so much for your understanding. I will continue to pursue publication, it will just be on a different timetable. 

September and My Constant Companion: My Chronic Pain Awareness Story 

“You’re never as alone as you think you are. People don’t tend to broadcast certain kinds of pain, so you often don’t see it.” 

Last week, I wrote about my Chiari Malformation story for Chiari Malformation Awareness Month. You can read it here. Chiari is a brain condition that falls under the category of rare disease, but is actually more common than people realize. However, few talk about it. It affects me with chronic pain every day. 

It is also Chronic Pain Awareness Month, so I decided to write a separate post specifically about my battle with chronic pain. I don’t honestly talk about my battle with pain very much, and haven’t written a post specifically about it yet. Chronic Pain affects millions of people every day. Back pain is the 2nd most common reason people go to their doctors after colds. And yet pain can make people–especially young 26 year olds, supposedly in the “primes of their lives”–feel terribly alone. That’s why I’m writing this post: to remind people with painful conditions that they’re not alone. 

I have two related conditions that cause lifelong chronic pain, Ehlers Danlos Syndrome and Chiari Malformation. In my previous post, I explain them both using child-friendly metaphors, since I am an educator who works with children, and also a mother. I also came up with an educational metaphor for my chronic pain. 

Imagine that everyone has an invisible stoplight above their heads that tracks their pain levels. Green means “Go”: no, or very little pain. “Yellow” means “slow down”: I’m in pain, moderate and often crippling levels, but I’m still able–or at least have–to do the regular tasks in my life, if at a slow, gentle pace. I work, I parent; but with every motion, I am aware of pain. Everything I do sends up a yellow flare: “slow down! You are in pain!”

And then there is red: “stop!” This is when one is in so much pain they are unable to do anything else but think about the pain.  

I mostly live in yellow. There’s a whole lot of “wait” that goes on with my–and many other people’s–chronic pain. 

My pain scale also has adjusted as I have learned to live, necessarily, with chronic pain as my constant companion. 

Here’s the thing: I’m never truly free from pain. I never don’t have a headache. I suffer from costochondritis, or chest wall pain that has been severe enough to make me think it was a heart attack, almost daily. I have had several severe pain attacks that have sent me to the emergency room, but my day to days, when I go to work, run around with kids, have fun, and live out my call are never pain-free. 

My pain makes me have to make hard choices. Right now, the hardest pain related choice I’m facing is brain surgery on the horizon for my Chiari malformation. The only way to possibly reduce my Chiari pain long term is through surgery, called a Decompression, and I have already reached the peak of what other methods, such as medication and exercise and diet, can bring me in pain and symptom relief. But surgery is not a cure, and in some cases, surgery opens the gates for more pain and more surgeries. 

And on top of this big pain related choice I’m wrestling with–update to come, I make little pain related choices every day. Should I run around with my daughter and risk being in extra pain for another three days? Will taking an extra shift at work make my pain keep me up with painsomnia the next night? While my pain doesn’t define me or my life, it does factor into many of the choices I must make, big and small, on a daily basis. 

While I have learned ways to reduce the pain, none of them completely get rid of it. Some days, the medications I take really help. Some days, exercise does; some days, rest does. And some days, none of these things help. Some days, I just push through and hope the next day will be better.
Often, I have a positive perspective about my pain. I admit, I don’t always. Some days, my pain defeats me. I let my pain get the best of me, and I feel like I am nothing other than my pain. It also makes me feel very alone, even when I am surrounded by others. And I am sure I am not the only one who feels this way.

There is a print of a wolf, done by the incredibly talented The Latest Kate, that hangs behind my dresser in my bedroom. The white behind the wolf, which you can see above in this post, is “You’re never as alone as you think you are. People don’t tend to broadcast certain kinds of pain, so you often don’t see it.” 

This quote serves as daily inspiration for me. Pain makes me feel unnecessarily alone so often. People are scared to talk about their pain. I’m here.  You are never alone. 

I encourage people, if they feel open to doing so, to share their pain stories with others. Vulnerability and honesty is one of the best things we can do to deal with our chronic pain. No, it won’t take it away, but it will remind us that we are not alone in our pain. We are all human, and all together. We can live our best lives despite our pain, and it is hard, but we can do it: together. 

September and My Broken Brain: My Chiari Awareness Story 

September is Chiari Malformation Awareness Month, as well as Chronic Pain Awareness Month. I experience Chronic Pain due to both my Chiari Malformation and my Ehlers-Danlos Syndrome (which has its own awareness month in May.) I will be writing a separate post for Chronic Pain Awareness month on my own experience and relationship with Chronic Pain, but this post is specifically on my experience and journey with Chiari Malformation. I have mentioned that I have the condition regularly in my blog, but I have not really talked in depth about it or about how completely it affects my life. 

Arnold-Chiari Malformation, or simply Chiari Malformation, is a condition where brain tissue from the cerebellum extends too far into the spinal canal. Usually, as in my case, it is a birth defect, but it is not discovered until later in life, on an MRI. It is often asymptomatic, but can just as often cause very extreme symptoms, as it does in my case. Symptoms include headaches, neck pain, coordination issues, dizziness, vision, voice, and throat problems, and various complications that can arise, including fainting and blacking out: which is how I first discovered that I had Chiari in 8th grade. 

It has taken a while for me to come up with a teachable metaphor to explain Chiari Malformation to young people. I believe it’s important to be honest about my medical conditions both with my daughter and those I teach. I have found it to be such a great character building tool, both in promoting empathy and teaching them they’re not alone, since so many kids have health conditions like asthma, allergies, and disabilities, and it’s really inspiring for them to see a teacher who has conditions too but still plays with them and teaches them. 

I explain my other condition, Ehlers-Danlos Syndrome, as my body being like a chair held together with bubble gum instead of glue. Chiari is like hard boiling two eggs, shown in the picture I drew above. A non-Chiari brain is the regular egg. A Chiari brain is the overboiled egg, that has some extra egg hanging out of the shell. In a body, it hangs into one’s upper spinal column.

My Chiari story is a strange one because it is a story of being diagnosed, forgetting I was ever diagnosed, and rediscovering the diagnosis years later. I had migraines from an early age: really, as long as I can remember, I have had severe headaches on and off, to the point I would vomit they were so bad. And I had a bit of blacking out upon standing as well, but I’ve always been quite tall for my age, and my mom had it too, so we figured it was just a blood pressure thing in me like it was in her, nothing to really be concerned about. I was regularly seeing doctors all through this time, who agreed. 

But then, in 8th grade, I switched from playing the trombone in band to playing the tuba, and for this tiny girl to start playing a huge instrument was the trigger I needed for my birth defect to really rear its head and start being seriously symptomatic. When I fainted during a tech rehearsal for a musical I was on props crew for while lifting something–Chiari is often made worse by bending down and lifting–I got an MRI in the ER, and they discovered my malformation. 

Chiari Malformation is a lifelong, incurable condition. It is also not dependant on the size of the herniation, or amount the cerebellum is extended into the spinal column: one can have a large herniation and not be symptomatic, or a smaller herniation and be extremely symptomatic. Surgery can be extremely helpful for some people, and for the most part carries few risks, but is not a cure. Many develop new symptoms, or need repeat surgeries. Because of this, despite meeting with a renowned pediatric neurosurgeon and Chiari expert in another state, my parents decided to not go through with the surgery, and together with my medical team and symptom management hoped that I would outgrow my symptoms. 

And, seemingly miraculously enough, it seemed like I did grow out of the symptoms. I stopped seeing neurologists and neurosurgeons, and my doctors in MI completely. I moved several times and never got my full medical records transferred. And I completely forgot about my 8th grade Chiari history when I started having terrible migraines shortly after the birth of my daughter. 

Since the symptoms were so different, my mom, who remembered my Chiari, unlike me, didn’t connect the dots and remind me of my diagnosis. Over a year after the migraines, and later horrible all over chronic pain and many other symptoms, I was misdiagnosed, in July of 2016, with fibromyalgia. 

The dots were finally connected in December of 2016, when I was 25 years old: over a decade after I was originally diagnosed. Now, at 26 and still extremely symptomatic, and having reached the limit on what we can control with other symptom reduction methods such as medication, surgery seems our only potential option, and I am leaning towards it, consulting experts and making plans. But it’s still not an easy decision, as a mother, an educator, someone who knows that it’s not an easy fix. I want to live my best possible life to live out my call; for my family, for all my kids, biological and those I teach. Will surgery help with that? It’s something I think about, and pray about, over and over again. 

Until then, I believe it’s so important to raise awareness about Chiari. It may not be well known or extremely talked about, but it is more common than you think, and what the Chiarians in your life could use is awareness and support. Each day with this illness is a battle, but I am convinced that if I work hard enough, I can find the teachable moments in it, both for myself and for those for whom my life will hopefully inspire: especially the next generation I teach.