Welcome to Tissue Issues, an advice column from comedian Ash Fisher about connective tissue disorder Ehlers-Danlos syndrome (EDS) and other chronic illness woes. Ash has EDS and is very bossy; having an advice column is a dream come true. Got a question for Ash? Reach out via Twitter or Instagram.
Dear Tissue Issues,
I’m a 29-year-old woman with hEDS. I was on disability and using a wheelchair for a while, but I eventually found great physical therapy and felt better than I had in years and was able to return to work full-time. Then last month I tore my ACL while hiking. Now I feel like all my progress has been undone. I’m so depressed.
How can I stay hopeful when every time I start to get better, I just get injured again? What was the point of all my hard work when I’m just back where I started? — Defeated
Dear (Temporarily) Defeated,
I am so sorry about your ACL. My understanding is that that particular injury causes quite a bit of pain, as well as a long recovery. I wish this hadn’t happened to you, but it did, and now it’s time to make a plan.
To start, let yourself feel your feelings! You can cry and yell and eat lots of ice cream. Throw yourself your own personal pity party. I mean it! This situation sucks. It’s unfair and unexpected, and you’re understandably grieving the stronger, non-injured body you had just a few weeks ago.
I hear how devastated you feel, and I want you to own that devastation.
So be sad right now. Be “selfish.” Sob and whine and moan and think of all the “what ifs” that could’ve prevented this.
And then — and this is important — get back to healing and strengthening your body.
Set a limit for how long your pity party lasts. I recommend no more than a week, since deconditioning happens especially fast in hEDS bodies.
This pity party trick came to me one summer during college, after losing a job I had counted on to pay my rent and bills. I felt hopeless and stupid and scared.
So I decided to let myself feel angry and sad and weepy — for one day. I played video games with my roommates, whined about how unfair it was, and drank a lot of beer (ah, youth). I committed to giving myself 24 hours to be a mess. Then it was time to problem-solve.
The next day, I threw myself into my job search. I was surprised at how effective my pity party technique was. Instead of stuffing my feelings down (where they’re likely to explode later), I let them out fully and immediately.
I woke up feeling refreshed and determined to turn my situation around. I found work and ended up having a fun and productive summer.
I realize my situation is not identical to yours, but I believe it applies to you anyway. Your life changed in an instant and now you have to deal with the fallout.
And you know what? You’ve come back from injuries and deconditioning before. You will come back again.
I know how demoralizing it can feel to have years of hard work seemingly undone in an instant. But all your hard work is not undone.
With hEDS, as you know, we never fully heal from our injuries. That’s why so many of us “fall apart” in our late 20s or early 30s from the accumulation of decades of injuries.
It sounds like you experienced the common trajectory of physically breaking down in adulthood. But you then accomplished a less common feat: building yourself back up.
It’s easier to resign yourself to a life of pain than to fight back and find solutions. You didn’t take the easy way out. You didn’t give up. You found hope and help. I am extremely proud of you for figuring out how to live in a body with defective collagen.
This injury is a setback. It’s not a life-ender. You’re not starting over from square one.
You now have the benefit of knowledge — how to get and stay strong; doctors and physical therapists who understand EDS; an awareness of what your body needs to stay healthy.
All those tips and tricks you’ve found to get strong are still at your disposal. Now you need to figure out how to tweak them so they work with this new injury.
You mentioned physical therapy was a big help to you in the past. Do you still have access to PT?
As you obviously understand, PT is one of the most effective parts of an EDSer’s pain relief toolkit. Your knee needs time to rest and heal, but there are workarounds to keep the rest of your body strong and healthy.
Focus on what you can do, not on what you feel you’ve lost. I realize that’s a tall order, but I know you can do it. You’ve done it before.
You can still do your PT exercises for your other leg, your back, your neck, your shoulders, etc. Talk to your PT about how to maintain muscle strength in the rest of your body while your knee is healing.
Put out a call for ACL stories in online EDS forums. I find reading others’ success stories both encouraging and comforting. I guarantee there are other EDSer’s who’ve torn their ACL and recovered.
It’s so hard to feel hopeful when everything sucks at the moment. Think about how you felt a few years ago when you couldn’t work and had limited mobility. Did you ever think you’d be working full time and hiking again?
My mission with Healthline is to spread hope about EDS.
When I was diagnosed, I truly thought my life was over.
But, like you, years of hard work put me in a stronger place than I ever dared imagine.
I am always aware that I am one injury away from my old life of immobility and constant pain. So I make sure to appreciate each day that I’m able to exercise, work, and live a fulfilling life.
But I also know that if and when I get my next serious injury, I will get through it. You will, too.
You’ve done it before, and now it’s time to do it again. I suspect that when you’re back to living your “normal” life in 6 to 12 months, you’re going to look back on this time with amazement: at how well you’re doing, at how far you’ve come, at how strong you actually are.
You have the tools, you have the support, you have the will (even if you don’t think you do right now). Be tender and loving with yourself. You’re far too badass and strong to give up.
I’ll leave you with the last two lines of an Edna St. Vincent Millay poem that brings me peace in hard times:
“Let us turn for comfort to this simple fact:
We have been in trouble before… and we came through.”
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.