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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 ‚Äúdress up days‚ÄĚ 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 ‚ÄĒ 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 ‚Äúchronic illness‚ÄĚ that I realized I¬†had a new identity. I was chronically ill. Armed with that phrase, I began¬†searching for ‚Äúmy people.‚ÄĚ 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 ‚ÄĒ in so many moments ‚ÄĒ having¬†someone to say, ‚ÄúYeah, I feel your pain‚ÄĚ 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 ‚Äúsick life.‚ÄĚ 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¬†‚Äúnormal.‚ÄĚ 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 ‚ÄĒ 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 ‚ÄĒ¬†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.

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