My Ongoing Struggle with my Diet as Someone with Chronic Illness 

Once upon a time, I was a girl who loved food. It was one of my greatest passions. I loved to eat and try new things. 

There was a little problem, though. 

Things I ate tended to make me sick. I would get sick after so many different meals that it was difficult to pin down what, exactly, my food triggers were, only that I had a lot of them. 

I have tried cutting out things that likely make me sick many times over the years, with varying levels of success. Dairy was the first thing I learned that made me sick, as a kid. I would go through phases where I was good and avoided it completely, but then I’d see other kids eating things and, since my allergies weren’t life threatening, decide the ensuing issues were worth it and would just pretend to not have the allergy. The same happened years later with gluten. The healthiest two years of my life were the two years I cut it out, but I added it back in when I was pregnant and have not been able to have any sustainable healthy diet changes since. 

These last three years since my daughter was born have been a spiral of up-and-down diet choices and declining health. I know that what I eat affects how I feel, but I also know that likely, I will feel badly anyway, because it doesn’t control completely how I feel. So it’s a rollercoaster of conflicting emotions. “Eating well isn’t going to cure me, so I might as well eat delicious things.” “Other people can eat whatever they want. My illness already impacts so many areas of my life. Why does it have to impact my diet, too?” “So many foods make me sick that I don’t even know where to start. It’s too overwhelming. I might as well not try at all.” 

I realized the other day, suddenly, that all of these issues have made me actively afraid of eating. I don’t get the joy out of it that I used to, because planning each meal is a tedious task full of “what ifs”. So I finally go through seasons where I just totally give up and eat whatever I want, knowing that things are making me sick and just ignoring it. 

I am confident, however, that this season of food nervousness in my life won’t last forever, if I finally actually do the work to repair my relationship with food. My 2017 one-word resolution, which I have written on before, is wellness, and total wellness needs to include me healing my relationship with food.

For me, this means several different things. Firstly, it means buckling down and eliminating the foods that are likely making me feel poorly: not just for a few weeks and then giving up, but for a long enough time to track real progress, especially since I really know, deep down, what my biggest food triggers (gluten, dairy, alcohol) are and just don’t want to give them up because they’re ingredients in some of my favorite things and I don’t want to accept that I don’t get to eat them when other people do. My overall quality of life is so much more important than the fleeting joy I get from eating things that are ultimately destructive to my personal health. 

This also means accepting I am different from other people, and diet limitations are some of the limits on my own life I must accept. This can definitely be one of the hardest areas of accepting my chronic illness for me: the comparison trap. I look at other people around my age without chronic illness and often idealize their lives. Doing so depresses me: I imagine them all doing anything and everything they want, unencumbered by illness, while my illness affects so many areas of my life. Does it really have to affect how I eat, too? It’s not like I have life-threatening allergies, so can’t I just ignore them and experience joy through eating cheese, donuts, and the like? 

But what I try and remind myself is that everyone is limited, chronic illness or not. No one gets to do everything in life, and everyone must make very personal choices in what they need to do to live their own personal happiest, healthiest life. I know certain foods are making me feel worse, and in the long run limit me from things I care about more than food: from being at my personal best. So I need to buckle down, commit to this, and make the choices I know will be best for my overall long-term wellness. 

I am not doing it alone, and am thankful for my support system through this. I know in order to succeed in totally transforming my diet and sticking to foods that make me feel better, I need my friends and family to hold me accountable: which they have done an absolutely fantastic job at. 

And I know already that this new adventure of eating healthily and working on wellness in this area will hold joyful surprises as well. Just today I spent a whole morning teaching my three-year-year-old daughter to make carrot “spaghetti” using a spiralizer. We both had so much fun, and the joy made the final product so much better. 

It’s going to be hard, but I hope by the end of the year I can write a post about how my eating habits have transformed and helped me thrive despite my chronic illnesses. I have faith that this is yet another area where I am stronger than my illnesses, and I am committed to following through. 

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Piecing Together the Life Puzzle of Being Young with Multiple Illnesses

Being in your 20s, from what I can tell, is complicated and hard and challenging for most people. For those who are chronically ill and mentally ill at the same time, like I am, it holds its own unique challenges. 

Is being 25 with bipolar disorder, Ehlers-Danlos Syndrome, Chiari Malformation, and several other conditions harder than any other way of being 25? I honestly couldn’t tell you, nor would I want to. Honestly, nothing truly good seems to come from comparing one person’s story o another. Everyone’s life holds its own unique challenges. 

What I do know is my own experience, and that each day that I live with both mental and physical chronic illness feels like a day that I am further piecing together a puzzle of how to best live a whole life of wellness and be the person God created me to be, one piece at a time. 

Some days, the pieces slide into place easier than others. Some days, it seems like I’ve completed a whole corner or side to the puzzle, only to completely demolish that corner and start over in a few days or a few months and a few years. 

There are many questions to ask as I assemble the puzzle, questions I can begin to answer now and questions I can’t. Some of these are questions all twenty-somethings are asking, while some of these are questions in which my chronic illnesses play a unique role. How do I find employment that is meaningful, something that is not just a job but a career, something that I can be happy at over a period of time and where I can feel like I’m making a difference? And how can I do that work and still take care of myself at the same time? Is it even possible to work in a helping profession while living with chronic pain? How long will I even be able to work at all? Is it a career I can work long term on a split shift, so I can come home and rest in the middle? 

Where should we settle down and make roots? Should it be in a place where I feel drawn, but am farther from family, or where I am closer to family who can help me through my illness, but have to leave meaningful work I love? 

And what about family? I had my daughter when I was 22, before I was really sick, which I am really thankful for. But my choice to not have a second child is definitely hugely based on my health and my ability to dedicate myself to my daughter but still focus on myself. 

Where does balance, in general, fall into my life? How do I fit my faith in? Do I choose Bible reading, or sleep? Which will help me be more well rounded in the long run? What church do I choose? What church family will support me best professionally, personally, as a mother, as a wife, and as an ill person? Is there even a church that can fulfill all those roles? Will I find time to volunteer? Where does being a friend fall in the midst of all of that? How can I support my friends best admist their lives while seeking adequate support for myself as well, without feeling like a burden? 

Notice that this post has ended up being a lot of questions, and very few answers. I think that’s ok, because that’s where I am in life right now. It’s a fairly good place, but it’s a very open-ended place. It could go in many different ways, and there are many, many considerations to make. 

These considerations are definitely affected in ways both big and small by my chronic physical and mental illnesses. There is absolutely no avoiding that. These illnesses will be there for the rest of my life, so just like anything else that will be there for the rest of my life, they must be considered when I and my husband make major life decisions. But that is not necessarily a bad thing. 

As I work on my 2017 goal word of wellness in each area of my life, chronic illness helps bring definition to my life and helps me trust God moreso than I probably would without this specific set of challenges. While some days, I find very little to be thankful about my chronic and mental illness battle, on other days I am able to reframe these battles and see the ways they help make me stronger earlier in my life. I can’t wait to see the definition they continue to bring, because if I am going to continue to have them, I am going to continue to make the most of them. 

From Struggle to Strength: Reframing the Year I got my Diagnosises 

Looking at things in a different way is often what brings me strength. It’s hard to do when I’m in the midst of things, but when everything is said and done, if is a lot easier to step back and see the big picture and see what God has done in my life. This is one of my favorite things to do. It’s especially true as I reframe and wrestle blessings out of my chronic mental and physical illness. Yes, I have these things, and sometimes, in the moment, it feels like they are winning. But when I am able to step back, I am able to see they never so . God won. I won. 

A year that I thought initially was a year of great struggle, 2016, is an amazing example of that. 

In my writing just after 2016 ended, I wrote about how hard 2016 was, and how much better 2017 would be. I couldn’t see the big picture of 2016 yet. I was too close to step back.

But now we’re four months into 2017, and I am able to look at 2016 with new eyes. And sure, it was a hard year. It was the her I received or learned about my many diagnosises. But goodness, did I triumph. I grew in collosal amounts of strength, strength I never would have had without those challenges. 

So I’m not going to list my diagnosises​ in this post. I’ve listed them before, and they’re no more important than the lessons I learned in 2016 despite, or maybe even through, those diagnosises.

 I learned that I am smart. My brain may be riddled with headaches, but it is also filled with knowledge. It is able to make complex connections and witty comebacks. It is filled with wisdom beyond its years, and many facts about subjects it cares deeply about.  

I learned that I am beautiful. When I look in the mirror, I like what I see. I am not perfect, but I have both inner and outer beauty. I work hard so my soul reflects what is on the outside. I work hard to smile even on the dark days, and brighten up people’s days. 

 I learned that I am strong. I may not have physical strength, but 2016 proved an incredible resilience of spirit and mind beyond anything I ever knew I had. I can withstand so much, and keep going. I am strong. I am capable. I persevere. 

I had always thought of myself as average before 2016, and it was only this year that I started truly recognizing my positive qualities. I also plain old just did a lot in 2016. We moved. I wrote a thesis. I got a masters degree. I started writing the novel that I am working to publish. 

If I was able to finally accept so many positive things about myself the same year I got my diagnosises, that shows me pretty definitively they are realizations my illnesses will never be able to take away. And because of that, I don’t think 2016 was a bad year at all. In fact, looking back, it was a pretty great year. I finally accepted a lot of awesome things about myself, and God and my incredible support system were there all the way through.

“Church Shopping” with Chronic and Mental Illnesses 

First of all, sorry for the absence around these parts the last week! It was spring break for the school district I work in, which meant I worked spring break camp and massive overtime, and was too tired to do much of anything when I got home. But I really bonded with a lot of the kids and had a great time. Glad to be back to my normal schedule, though! (For those who don’t know, I work as a Site Administrator for an Elementary School Before and After School Program. It’s a blast!). 

There’s a really funny video going around–a parody of the show House Hunters–thats called Church Hunters. Watch it here. In this video, a couple is trying to find the right church for them, and it parodies modern church, parishoner-centered, experiential-culture. 

Now, if you’re someone who is religious and attends church, you probably had a good laugh at this, because you know that there’s so much more to church than this. Church is about way more than what a church has to offer: it’s about what the person who attends church can bring to a church, too. Everyone has their own gifts. When the right church for the right person combine, it’s a beautiful thing, because the person brings their talents and makes the church a better place, and the church makes the person a better person, and together they are truly able to advance the Kingdom of God and be the hands and feet of Christ. 

But what happens when mental and chronic illness are brought into the Body of Christ which is the Church? 

I believe wholeheartedly that the Church–both the whole, universal Church, and individual churches which are all supposed to be little branches of the Church Universal–are all the Body of Christ, and every single member is made in God’s image. That’s right, every single member. Often, all members aren’t treated that way, and it breaks my heart.

 I believe if Jesus lived today, he would be appalled by how many churches treat people with mental and chronic illness. They are often rejected, stigmatized, left behind, and ignored. Because of this, many people with chronic and mental illnesses, which are often invisible, hide their illnesses from church communities, which are supposed to be places of love and mutual help and support but more often become a place of judgement and dressed-up facades. There are many churches that do strive to do better, though, and I hope everyone with a mental and/or chronic illness finds one. 

I haven’t been in the position of trying to find a church family to belong to for a while, and it’s especially complicated for me because I have my Masters Degree in Divinity and have worked on staff of several different churches. The last few churches I have been at I have been at because they’ve hired me. I have learned a lot and benefitted a lot from all these churches, but I never really “church shopped,” or looked for a church that I will attend, not work at, that will not only best fit mine and my family’s needs, but also that I can contribute to and help through my gifts and talents.

Since I have last looked for a church, years ago, I have received several diagnoses that might not define me, but definitely affect how I view the world, and myself. These include Bipolar II, Ehlers Danlos Syndrome, PTSD, and Mast Cell Activation Syndrome, adding to the Chiari Malformation, Generalized Anxiety Disorder, and Panic disorder I was already diagnoses with. My health has deteriorated, and it affects how I act, including in church. This makes me have several considerations as I consider finding a church that will accept me for who I am and that I can give my gifts and graces.

First of all, is it a church that generally is accepting and understanding of mental health? I know lots of churches that get very squeamish around discussions of mental health. They see anxiety and depression and other illnesses as sins, not disabilities, and they do not take the time to understand them correctly. Is it a church that wants people to sweep their mental illnesses under the rug and be their polished, prim, dressed up “Sunday selves”? Jesus didn’t deal with “Sunday selves.” He dealt with prostitutes and tax collectors; widows and orphans. He loved people the way they were, and called others to do the same. 

I want a church where I can be open about my anxiety, panic disorder, and bipolar II, and where other members feel open about theirs, too. I want a church where people would be no more nervous with me working with children and volunteering and leading in different church leadership capacities than they would be someone with diabetes or heart disease. I want a church that advocates for inclusion of people with mental illness in their church and other churches and sees them as an essential part of the body of Christ. I can help with this, but I can’t do it on my own. It has to be a whole church effort. 

And generally, how is the church with chronic illness? Is it the kind of church that only is comfortable with illnesses that are neatly resolved after two weeks of prayer? This sadly happens more often than you think, and at many churches I’ve seen. These churches preach the power of prayer, and say if you only pray hard enough, you will be healed. 

But I don’t believe that my chronic illnesses will likely be healed. They are genetic and lifelong. And while I believe God is a God of miracles, I don’t think curing my Ehlers-Danlos Syndrome, Chiari Malformation, or Mast Cell Activation Syndrome are likely miracles God is going to perform. I will likely have these illnesses for life, so what I want from the body of Christ is prayer for management of symptoms, help when the symptoms flare up badly, and most of all, love and understanding, rather than judgement and bewilderment. I want a church where they help put my daughter’s coat on when I had to sit through all the hymns because my hips hurt too badly to stand, not where they look at me judgementally because I’m clearly too young and healthy looking to be ill. I want a church that understands I have good days and bad days, and that I might have to call off volunteering for a Sunday because of a flare, but I will try my very very best to be there. And I want a church that will still let me help; I may have sicknesses, but I am passionate about helping children develop lifelong faiths, and I am very good at what I do, even if my health sometimes gets in the way of that.

I know not all people with chronic and mental illness are religious, and even if they are religious, maybe they do not attend church for various reasons. But for me, church attendance is very important to me, and I want to find a church where I can be open and help them be the hands and feet of Christ just as much as they help and support me. We don’t have any family in the area, so it’s important for me to find a church to be like family for us. 
I have found a church that seems promising, but I have only visited a couple times, so I will have to keep going and see what God has in store for me! Until then–and past then–I plan to keep being an advocate for Christians with mental and chronic illness because they bring so much richness and value to individual churches and the Church Universal.