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 @AshFisherHaha.
Dear Tissue Issues,
I’m a 30-year-old woman and just found out I have hypermobile EDS. While it’s kind of a relief to know I’m not crazy or a hypochondriac, I’m also devastated. I used to be so active. Now I can barely get out of bed most days. I’m in unbearable pain, and I’m dizzy and nauseous every day. I’m so sad and angry about every doctor missing this for so long. I just want to scream and cry and throw things. How do I get over this?
— Angry Zebra
Dear Angry Zebra,
Oof. I’m so sorry you’re going through this. It’s a head trip to find out in your 30s that not only were you born with a genetic disorder, but there’s no current cure and limited treatment. Welcome to the bendy, achy, frustrating world of Ehlers-Danlos syndrome!
Though EDS has been with you forever, it can feel like a sudden intruder when you find out so late in life. Since we can’t make your EDS go away, and we can’t personally punish every single incompetent doctor who ever dismissed your symptoms (though I’d love to), let’s focus on acceptance of this very unfair diagnosis.
First, allow me to give you yet another label: You’re grieving, girl! This is bigger than depression. This is capital-G Grief.
Depression is part of grief, but so is anger, bargaining, denial, and acceptance. You were a busy, active 20-something, and now you can’t get out of bed most days. That is sad and scary and hard and unfair. You’re entitled to those feelings, and, in fact, you’ll have to feel them to move through them.
For me, differentiating between depression and grief helped me make sense of my emotions.
Though I was deeply sad after my diagnosis, it was distinctly different from the depression I’ve experienced before. Basically, when I’m depressed, I want to die. When I was grieving, though, I wanted so badly to live... just not with this painful, incurable disorder.
Look, what I’m about to say is trite, but triteness is often rooted in truth: The only way out is through.
So, here’s what you’re going to do: You’re going to grieve.
Mourn your former “healthy” life as deeply and earnestly as you would mourn a romantic relationship or death of a loved one. Let yourself cry until your tear ducts run dry.
Find a therapist to help you process these complicated feelings. Since you’re mostly in bed these days, consider an online therapist. Try journaling. Use dictation software if handwriting or typing hurts too much.
Find EDS communities online or in person. Wade through the dozens of Facebook groups, subreddits, and Instagram and Twitter hashtags to find your people. I’ve met many IRL friends through Facebook groups and word of mouth.
This last piece is especially important: Making friends with people who have EDS allows you to have role models. My friend Michelle helped me get through the worst few months because I saw her living a happy, thriving, fulfilling life despite being in pain all the time. She made me see it was possible.
I was just as angry and sad as you describe when I got my diagnosis last year at age 32.
I had to quit stand-up comedy, a lifelong dream that had actually been going well until I got sick. I had to cut my workload in half, which also cut my salary in half, and I got into a bunch of medical debt.
Friends pulled away from me or outright abandoned me. Family members said the wrong things. I was convinced my husband was going to leave me and I’d never again have a day without tears or pain.
Now, more than a year later, I’m no longer sad about my diagnosis. I’ve learned how to better manage my pain and what my physical limits are. Physical therapy and patience have gotten me strong enough to hike 3 to 4 miles a day most days.
EDS is still a big part of my life, but it’s no longer the most important part of it. You’ll get there too.
EDS is a Pandora’s box of a diagnosis. But don’t forget the most important thing in that proverbial box: hope. There is hope!
Your life is going to look different than you dreamed or anticipated it would. Different isn’t always bad. So, for now, feel your feelings. Let yourself grieve.
P.S. You have my permission to occasionally throw things if it’ll help your anger. Just try not to dislocate your shoulders.
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.