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.