Things that I wish someone had told me when I first got sick.

You will grieve. 

The grief and longing for your health and previous lifestyle will seem unbearable but it’ll get less intense over time. When the gravity of what was happening to me became clear and I realized that I wasn’t going to quickly bounce back to my old life, I felt suffocated and fell into a really deep depression. At first, it was all-encompassing, but over time, I’ve become more okay with my limitations and the prospect of building a life around what I can do now.  That’s not to say that I don’t have bad days; there are days when I break down and cry for hours because of the things I’m missing, but day to day, I’ve become more at peace with where I’m at and I’m not constantly bothered by what I’ve lost.

Shifting your focus from recovering to living with your condition helps. 

I know this isn’t helpful for everyone but for me, shifting my focus from “ When I get better I’ll do XYZ” to “What can I do now and what adaptations can I make so that I can do that?” has really helped. For about the first year, I kept telling myself that I’d get better soon and that then I could live my life, but now, I’m looking for ways that I can create a life for myself even if things don’t change.  This doesn’t mean I’ve given up hope of ever getting better, it just means that I’ve focused more on making things feasible right now, instead of putting all my focus into getting better. I feel like whether or not I make a full recovery is out of my grasp, but I do have control over what I do right now.

Mobility aids are life-changing. 

Mobility aids are game-changing and you don’t need to wait until you’re “sick enough” to use one. Like many others, I originally thought that if someone is in a wheelchair, it’s because they can’t walk. The truth is that lots of people who technically can walk for short periods of time use wheelchairs to be able to do things that they wouldn’t be able to do one their own due to pain, fatigue, etc. Without my scooter, I  wouldn’t have been able to continue with my education or enjoy many of life’s simple pleasures. Wheelchairs are often portrayed as prisons and this is perpetuated by phrases like ” wheelchair bound”, but for me and many others, they give us back the freedom that we lost when our bodies stopped working properly. I highly recommend this video about ambulatory wheelchair users.

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Me on a gorgeous walk near my house. I hadn’t been here for 2 years because I can’t walk it on my own but my wheelchair allowed me to enjoy it. 

Make internet friends.

I’ve met some amazing people through Facebook and Instagram and as cheesy as it sounds, they have kept me going when everything has seemed too hard to deal with. Becoming sick/disabled pretty much overnight as an 18-year-old is an extremely isolating and unique experience. Being able to process it with others who understand and get practical advice really helps you feel less alone and more confident with yourself.

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Me meeting Hannah, a friend who I met over Facebook, in real life. 

Join support groups, but make sure they’re good for your mindset.

I’ve joined a bunch of online communities. Some have been empowering and have made me feel so supported. I’ve had strangers message me with advice, suggestions, and just pure encouragement. I’ve also had people who know nothing about me tell me that there’s no hope for me and that I should stop trying so hard to adapt my life to my constraints. Reach out for support, but make sure the groups that you engage in are a positive influence for you. I’m so thankful for the ones I’m in right now and the kindness that people I’ve never met have shown me.

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