The Extra Family You Gain When You're Chronically Ill
When you become sick, you enter into a secret world you never imagined you would even visit. You enter a world where “dress up days” are for doctors’ appointments, and showers are a luxury rather than a routine. You trade fashionable clothes for pajamas. Girls’ (or Guys’) Night Out is exchanged for a snuggle night with your fur baby and Netflix. (Let’s all take a collective moment to appreciate all that binge watching has brought to our lives…)
And all of that… well, it sort of stinks. I like yoga pants as much as the next 30-something, but it would be super nice if I were wearing them because I like the look rather than because jeans will cause my hip to dislocate. There are a lot of unfortunate tradeoffs when your life deters into the world of illness, and I won’t lie — I’m typically not a fan of all this life offers.
However, there is one super fantastic thing that happens when you’re chronically ill. Even though I would gladly exchange health for this perk, I’m glad it exists. It’s basically the only redeeming quality. When you are chronically ill, you get an extra family. In my first few days and weeks of realizing illness had become a part of my life, I had never been lonelier. It wasn’t until I saw the phrase “chronic illness” that I realized I had a new identity. I was chronically ill. Armed with that phrase, I began searching for “my people.” Thank God for social media. Thank all that is good and holy that I found Facebook groups for the chronically ill. You know what? No one tells you when you become chronically ill that you inherit an entire family of supporters through Facebook, Instagram and Twitter.
I get it. I know there is more to life than social media. I understand the risks of spending your life connected to social media rather than the life that is going on around you. However, the life that is going on around me isn’t terribly glamorous. Today, I’ve kept up with my medicine schedule, taken injections and worried about my bladder pacemaker. Does that sound like something you wouldn’t want to be distracted from? Yeah, I didn’t think so. Don’t get me wrong. I have a wonderful family and friends. They do all they can to support me. However, it doesn’t change the fact that they haven’t traveled this exact road of illness that I’m experiencing.
Why does it matter? A few months ago I posted to one of my chronic illness support groups that I felt discouraged. I explained to them that I had been trying to go to the gym, and I was accumulating far more injuries than progress. You know what? They got it. My online family reassured me that effort counts. They told me success stories, as well as their stories of dismal failures. Of course, every human has experienced health gains and fails, but only the chronic illness community can truly understand the struggle. Only my chronic illness family understands the pain of doing your best and having a body that just won’t cooperate. In that moment — in so many moments — having someone to say, “Yeah, I feel your pain” means infinitely more than advice.
In so many other instances, I’ve seen friends who had a daunting diagnosis, a failed relationship, or a traumatic doctor’s office experience receive support and love from dozens of people who have never met them. We support each other. We empathize. We ultimately strive to hold each other in this painful game of life as well as possible. For that, I am beyond grateful.
Years ago, before my health struggle became blatant, I would have told you I have all the friend and family support I need. I would have told you it’s impossible to trust friends you have never met face-to-face. I would have believed face-to-face encounters matter more than the relationships we forge through online communities. To some degree, I still believe that. However, I am forever grateful that I have an online family that understands the “sick life.” I love that people I have never met know that I love Disney more than any adult should, so they tag me into cute Disney memes. I appreciate that my odd obsession for sloths hasn’t gone unnoticed by my Facebook friends. I am grateful that I exist in a world that thinks I’m “normal.” The real world thinks I’m little more than the victim of unfortunate circumstances; my online chronic illness family knows that I’m doing my best. They see my struggle because it mirrors their own situation. They know I’m doing my best — even when that means I’m stuck on the couch for days.
Chronic illness bites. It’s a life sentence without parole that I wouldn’t wish on anyone. However, there is one wonderful side effect — online support. It exists, and it makes my days and nights more tolerable. As much as I appreciate my online family, I am fairly confident I’m not the only one. I’m guessing that throughout the community of chronically ill people, there are many who have benefited from the love and support of their new online family. That… well, that restores my faith in this chronic life. We have each other to lean on, and I know beyond a shadow of a doubt that really matters.
Have I mentioned that my online family is also great at suggesting binge-worthy shows from Netflix? Yeah, that makes them awesome, too.
Peace, love and health, friends.
The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.
Tiffany Early is a former middle school teacher who lives in Campbellsville, Kentucky, with her husband, Joe, and her dog, Zoey. Early suffers from Ehlers-Danlos syndrome as well as a type of dysautonomia called postural orthostatic tachycardia syndrome. Tiffany advocates for the disabled and chronic illness community through her personal blog www.crazychroniclife.wordpress.com and through an online support group she administrates. She strives to make the best and laugh at the challenges of her chronic illness life. She recently co-authored “Crazy, Chronic Life- A Handbook for Living with Chronic Illness” now available on Amazon.
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