When I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in 2018, the door to my old life slam closed. Though I was born with EDS, I wasn’t truly disabled by the symptoms until I was 30, as is common with connective tissue, autoimmune, and other chronic illnesses.
In other words? One day you’re “normal” and then suddenly, you’re sick.
I spent much of 2018 in a dark place emotionally, processing a lifetime of misdiagnosis and grieving some of the career and life dreams that I was forced to let go of. Depressed and in constant pain, I sought solace and guidance on living a chronically ill life.
Unfortunately, much of what I found in online EDS groups and forums was discouraging. It seemed everyone else’s bodies and lives were falling apart just like mine.
I wanted a guidebook to instruct me how to get on with my life. And while I never found that guidebook, I did slowly piece together tons of advice and strategies that worked for me.
And now, though my life is indeed different from how it used to be, it is once again fulfilling, rich, and active. That alone isn’t a sentence I ever thought I’d be able to write again.
So how, you ask, did I adjust to having a chronic illness without letting it take over my life?
1. I didn’t, really — but that’s OK
Of course it took over my life! I had so many doctors to see and tests to get done. I had so many questions, concerns, fears.
Give yourself permission to be lost in your diagnosis — I find that it helps to set a finite amount of time (3 to 6 months). You’re going to cry a lot and you’re going to have setbacks. Accept where you’re at and expect that this will be a huge adjustment.
When you’re ready, you can get to work on adapting your life.
2. I got into a consistent routine
Since I worked from home and was in severe pain, there was little motivating me to leave the house (or even my bed). This led to depression and worsened pain, exacerbated by the lack of sunlight and other people.
These days, I have a morning routine, and I relish each step: Cook breakfast, rinse dishes, brush teeth, wash face, sunscreen, and then, whenever I can, I shimmy into compression leggings for my hike (all set to the soundtrack of my impatient corgi whining).
A set routine gets me out of bed faster and more consistently. Even on bad days when I can’t hike, I can still make breakfast and do my hygiene routine, and it helps me to feel more like a person.
What could help you get up every day? What small act or ritual will help you feel more human?
3. I found doable lifestyle changes
No, eating more veggies is not going to cure your illness (sorry!). Lifestyle changes aren’t a magic bullet, but they have the potential to improve your quality of life.
With chronic illness, your health and body are a little more fragile than most. We have to be more cautious and deliberate in how we treat our bodies.
With that in mind, real-talk, no-fun advice time: Look for “doable” lifestyle changes that work for you. Some ideas: Quit smoking, avoid hard drugs, get lots of sleep, and find an exercise routine you’ll stick to that doesn’t injure you.
I know, it’s boring and annoying advice. It can even feel insulting when you can’t even get out of bed. But it’s true: The little things add up.
What would doable lifestyle changes look like for you? For example, if you spend most of your time in bed, research some light exercise routines that can be done in bed (they’re out there!).
Examine your lifestyle compassionately but objectively, withholding any judgment. What little tweak or change could you try today that would improve things? What are your goals for this week? Next week? Six months from now?
4. I connected with my community
I’ve had to lean heavily on other friends with EDS, especially when I was feeling hopeless. Chances are, you can find at least one person with your diagnosis who’s living a life you aspire to.
My friend Michelle was my EDS role model. She was diagnosed long before me and was full of wisdom and empathy for my current struggles. She’s also a badass who works full-time, creates beautiful art, and has an active social life.
She gave me the hope I so desperately needed. Use online support groups and social media not just for advice, but for finding friends and building community.
5. I stepped back from online groups when I needed to
Yes, online groups can be an invaluable resource! But they can also be dangerous and soul-crushing.
My life is not all about EDS, though it sure felt like that the first 6 to 8 months after diagnosis. My thoughts revolved around it, the constant pain reminded me I have it, and my near-constant presence in these groups only served to reinforce my obsession at times.
Now it’s a part of my life, not my whole life. Online groups are a useful resource, to be sure, but don’t let it become a fixation that keeps you from living your life.
6. I set boundaries with my loved ones
When my body started deteriorating and my pain worsened in 2016, I started canceling on people more and more. At first, it made me feel like a flake and a bad friend — and I’ve had to learn the difference between flaking and taking care of myself, which isn’t always as clear as you’d think.
When my health was at its worst, I rarely made social plans. When I did, I warned them I may have to cancel last minute because my pain was unpredictable. If they weren’t cool with that, no problem, I just didn’t prioritize those relationships in my life.
I’ve learned that it’s OK to let friends know what they can reasonably expect from me, and to prioritize my health first and foremost. Bonus: It also makes it much clearer who your real friends are.
7. I asked for (and accepted!) help
This seems like a simple one, yet in practice, it can be so freaking difficult.
But listen: If someone offers to help, believe that their offer is genuine, and accept it if you need it.
I injured myself many times last year because I was too embarrassed to ask my husband to lift one more thing for me. That was silly: He is able-bodied, I am not. I had to let go of my pride and remind myself that the people who care about me want to support me.
While chronic illness can be a burden, please remember that you — a human being with value and worth — most definitely aren’t. So, ask for help when you need it, and accept it when it’s offered.
You’ve got this.
Ash Fisher is a writer and comedian living with hypermobile Ehlers-Danlos syndrome. When she’s not having a wobbly-baby-deer-day, she’s hiking with her corgi, Vincent. She lives in Oakland. Learn more about her on her website.