It took me a couple years to learn that staying in bed does not help my pain.

When you’re in pain, your instinct may be to rest. What’s better for healing than taking a load off? Actually, lots of things.

It took me a couple years to learn that staying in bed does not help my pain. Though I’d always struggled with joint pain and frequent injuries, I assumed everyone was in pain all the time (and that I was simply clumsy).

In June 2016, after getting a hormonal IUD, my health plummeted. Suddenly, it was difficult to get out of bed each morning. That December, I dislocated my SI joint and was laid up for weeks.

As a comedian and freelance writer, I had no health insurance and no sick time.

So, I cut down on my out-of-the-house activities while continuing my workaholic lifestyle at home.

I usually worked from bed or on the couch. My injuries kept accumulating: multiple falls that resulted in torn ligaments in my thumb, ankle, and knee.

Once while showering, I felt dizzy, and then everything went black. A moment later (at least, I think it was just a moment), I woke up on my side in the tub. Instead of telling someone, I started showering by sitting down in the tub.

I canceled more and more comedy shows until I stopped scheduling them altogether.

After multiple foot injuries, I started using a cane, in secret. Internalized ableism made me feel weak and ashamed for needing a mobility aid.

As my body continued to betray me and my injuries added up, I wondered if it was my fault. Was I going crazy? Was I just lazy? Dramatic?

Long story short: I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in April 2018.

No, I wasn’t crazy: I had a genetic connective tissue disorder that no doctor had ever caught.

Knowing I had EDS made me rethink everything I thought I knew about my body’s abilities.

I became so afraid of getting injured again that I stopped doing tasks I used to be able to handle. Treating myself like the girl in the bubble didn’t actually help.

I was born with EDS. Why would it suddenly affect me so much?

While researching hEDS, I found little hope. The Facebook groups and internet forums in which I sought solace were full of stories of EDSers who could no longer work or socialize.

This quote I found floating around EDS communities haunted me:

“Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies, stirred from dreams of ourselves as we used to be, and the futures we imagined we’d have.”

For weeks, I thought of that quote daily, sobbing each time. Apparently, I was destined to live a life in bed — and in constant pain.

My 2018 was indeed spent mostly in bed, where my pain kept getting worse. In addition to the pain, I was dizzy and exhausted. As I processed my diagnosis and grieved my formerly active life, I sank into depression.

I was embarrassed that I was now disabled. My unpredictable pain and symptoms made me an unreliable friend and colleague.

Was my life over, at just 32 years old?

Then I read a comment on a Reddit EDS thread that changed my perspective: A woman with EDS wrote about how she forces herself to exercise, because it’s the absolute best treatment for our weird disorder.

She acknowledged that it sounds cruel to insist sick, disabled people get moving; she had resisted the advice for a long time herself.

Then I saw a similar post in an EDS group. A triumphant young woman posed by a waterfall, grinning. This internet stranger told us she had hiked 10 miles that day, and that 2 years ago she hadn’t been able to get to the bathroom without a walker.

For the first time since my diagnosis, I had found hope.

So I threw some KT tape on my wobbly knees and ankles, leashed my dog, and walked a mile.

I was sore after, but not any sorer than usual. So the next day, I walked 2 miles. I was determined to walk 3 miles the next day, but I woke up in too much pain.

Whoops, I told myself. I guess walking isn’t the answer. Back to bed.

What I didn’t realize was all that time spent in bed had made my symptoms worse. Why?

Because of deconditioning, a word I thought only applied to rescuing people from cults.

Your body deconditions when you don’t move it. For people with connective tissue disorders, like me, this can occur more rapidly.

As is common, I rapidly declined after my diagnosis. But nothing had physically changed in my body except that I knew the cause of my pain. So why was I getting worse?

According to an article by physiologist Dr. Michael Joyner, long periods of inactivity decondition the body, causing a wide variety of bodily changes, like excessively high heart rate during exercise, muscle atrophy, and loss of endurance.

My dizziness, the shower blackout incident, my increasing pain: It was all being exacerbated by not moving.

I thought I was being safe by decreasing my activity and resting so much. I was wrong.

As I explored exercise options, I made an online friend named Jenn. Jenn also has hEDS, yet she manages to work full time as a cake decorator, a labor-intensive job.

She told me that while it’s hard on her body, lying in bed all day was worse. “Motion is lotion!” she announced. It’s become my motto.

My walking experiment failed because I hadn’t paced myself. My body was deconditioned and weak; I was in no shape to increase by a mile each day. So I got a Fitbit to more accurately track my walks, and I tried again.

The first day, I walked around the block: about 500 steps. After a week, I increased to 750 steps. After about 6 months, I was hiking up to 3 miles at a time.

While it’s easy for me to tell you about why not staying in bed is so important, it’s not always easy to practice what I preach. Like many difficult lessons, I am frequently relearning this one.

This past weekend, I worked hard writing, cleaning, and packing for an upcoming move. I overdid it. Monday morning, I woke up in pain all over. So I spent the day in bed.

That was the wrong choice. It didn’t make it any easier for me to get up on Tuesday. Though I still felt like crap the next day, I forced myself to get up because I had a writing deadline. The simple acts of brushing my teeth and getting dressed help ground me. Just getting up and dressed made my body feel better.

When I lie in bed with pain, I tend to focus on that pain, which amplifies it. Since my phone is usually in my hand, I also end up straining my neck and upper back staring at it.

From research and discussions with chronically ill friends, I know this is a common experience. The soft comfort of a bed calls to our throbbing joints, promising relief from pain.

But sustainable pain relief doesn’t usually come from sitting around. We must take action by staying active, through whatever methods work best for our unique bodies.

Pacing

Increasing my walks by a mile a day was unrealistic and doomed to fail. Start with a walk around the block. Do that every day or every other day until it feels comfortable.

Then walk for one more block. Gradually increase until you can handle more. I highly recommend a Fitbit to track how much you’re actually moving.

Physical therapy

A good physical therapist can do wonders in strengthening your body and boosting your confidence. I was lucky to find a PT who specializes in hypermobility.

I realize not everyone has access to insurance and PT, so the internet is your friend here.

Daily routine

Find something to start each day with that gets you going. For me, it’s brushing my teeth, putting on clothes that aren’t pj’s, and applying a favorite lipstick. Once those tasks are done, I’m upright, refreshed, and ready to start my day.

Use online groups with caution

My obsession with EDS groups derailed my progress at first. I don’t want to disparage or dismiss disabled/chronically ill people or the forums we so often rely on. The pain and suffering of those posters is real.

But we humans are a suggestible bunch: After repeatedly reading that EDS meant my life was over, I believed it. Be careful what kinds of messages you internalize!


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.