I’ve been going to physical therapy for my Ehlers-Danlos Syndrome nearly every week for the past five years. My therapist primarily focuses on manual physical therapy—realigning my joints, working on those that are tightly compressed, and relaxing my spasmed muscles.

Over this time, I’ve seen minor improvements. There are periods when I experience fewer subluxations, and some of the triggers that used to cause them no longer do. (Do you know how nice it is to no longer worry that hitting the water hard at the bottom of a water slide will push my pelvis out of place?) And when I do sublux, the pain is lower than it used to be. So, while the progress is slow, it is making a difference.

She gives me exercises to do, but told me that if I wanted to exercise, the only safe exercises for me to really do were swimming and bike riding. I tried riding a bike, once, and it hurt me so bad that I was sore for a few days. That was out. I didn’t have room in my house for a stationary bike, so I bought a small under the desk one to use but I found it very hard to use because it didn’t stay in place when I tried using it, so it just sits around collecting dust.

So I did try to go to the pool. I had been trying to swim for the past few years, but so many obstacles got in my way—the biggest being that the pool I used was far from my house. And then when I finally started getting into a routine and was visiting the pool regularly enough to buy a membership, Covid struck.

When I tried returning to the pool afterward, they told me my membership had expired. It wasn’t a monthly or yearly membership but a prepaid pass with a set number of entries. However, since too much time had passed, they said the remaining entries on my pass were no longer valid. It was such a turn off that I never wanted to go back to that pool. And it was far. And they didn’t offer discounts to people with disabilities or for kids.

But I found a closer pool that was bus accessible and cheaper. And they had a disability discount. So I started going there. Periodically.

When I visited the Ehlers-Danlos specialist two years ago, she told me she wanted me to swim every other day—about three times a week. Based on her experience with other clients, those who swam three to four times a week were able to eliminate their chronic pain entirely, and she hoped the same for me.

Once I got my car, I started going a little bit more regularly. Still, I encountered other challenges that made it difficult to go frequently. But with advice from friends and some research, I found ways to overcome those hurdles (more on that in another post) and finally started swimming consistently.

Once I overcame those hurdles, I started swimming more often, usually twice a week.

The pool I go to costs $14.28 for an adult and $11.42 for a child or someone with a disability card. Since I have a disability card, I qualified for the lower price. A 10-pass card brought the cost down to just $10.29 per visit. (And I checked, those don’t expire.)

I looked into the cost of a pool membership, and with my disability discount, it was $802 per year. If I swam twice a week, that would bring the cost down to $7.71 per visit.

But the membership also includes access to the gym and classes—so in addition to making the pool cheaper, it would give me extra benefits for the same price.

I wasn’t sure how much I’d be able to use the gym, though. My physical therapist warned me that most gym equipment would strain my joints. I knew an exercise bike was an option though, and she said the elliptical machine would be safe for me as well. Additionally, while most of the available classes wouldn’t be suitable, the “Core” and “Osteoporosis Prevention” classes could actually help without causing damage since they were gentler on the body.

So, I decided that once I had proven I could consistently go to the pool at least twice a week for a month straight, I’d sign up for the gym.

Of course, there was the added perk that gym members could get a permanent locker to store their things between sessions instead of carrying everything back and forth. (Unfortunately, there’s a long waiting list for lockers, and you can’t even get on the list without being a member.)

One day in therapy, I was discussing how disheartening it was to do my hydrotherapy exercises because they felt so slow—nothing powerful or intense. In the past, I took pride in my physical strength and speed. I loved the feeling of racing down the length of the pool, heart pounding. But now, the only laps I was allowed to swim were slow and controlled, meant to build strength in my shoulders.

For someone who always prided herself on strength and power—especially as a woman (“I’m a woman, hear me roar!” was practically my motto)—being limited to such gentle movements felt weak and frustrating. Like I wasn’t even capable of swimming a normal lap.

But as I talked about it in therapy, I started rethinking what true strength really is. Strength doesn’t have to mean speed. In fact, many exercises are much harder when done slowly. I pictured martial arts masters executing slow, powerful movements and reminded myself that moving slowly doesn’t make me weak.

Still, I also wanted to do something that got my heart racing—not just because it made me feel powerful, but because it’s good for my heart, brain, and body as a whole. That wasn’t something I could do in the pool with my current limitations.

But at the gym? I could. That gave me another push to sign up after therapy that day. (This is despite the fact that at that point I hadn’t swam for a month due to an injury to my shoulder and knee, but that same morning my physical therapist told me to go back to the pool, pain or not, because not swimming was causing me other issues.)

So far, I’ve gone to the gym once and used the elliptical and stationary bike. I quickly realized that the experience would be much more enjoyable with headphones, so I ordered some bone-conduction ones (since all other types hurt me). The ones I currently have clip onto my goggles—not exactly useful for the gym. (I mean, I could wear goggles at the gym, but that would be both awkward and hilarious.) I also ordered some proper workout clothes and am waiting for them to arrive.

I also attended one “Core” class, and it was challenging—not just physically, but emotionally.

Since it was the first day I was back at exercising after my injury, my knee was still far from healed, and many of the core class movements put significant strain on it, making them impossible for me to do. Some exercises also strained my shoulders, and others, knowing my body, weren’t great for my pelvis.

So, I didn’t do everything. I modified some exercises to reduce strain on my injured areas. Others, I skipped entirely and used the time to do core exercises prescribed by my physical therapist. Sometimes, I just sat there, rubbing my knee to ease the pain.

Since I had arrived two minutes late, I didn’t get a chance to explain my limitations to the instructor. However, she noticed I was modifying movements and brought me some equipment to make them easier.

I was the youngest person in the class by far—the next youngest was at least ten years older than me, and many of the women were old enough to be my mother or grandmother.

It was frustrating to be the least capable person in the class. I couldn’t shake the fear that others assumed my struggles were due to being “fat and lazy” rather than my joint issues.

Logically, I knew they probably weren’t judging me. But with so much societal messaging about fat people and fitness, it was hard to get those thoughts out of my head.

And even if someone was judging me—assuming my struggles were due to being overweight rather than a genetic disorder beyond my control—I kept repeating to myself:

“The reason I can’t do these things has nothing to do with my weight. It doesn’t matter what others think. I’m doing a good job by showing up and working out, even though I’m in pain.”

Honestly, the mental workout that day may have been even harder than the physical one.

Since then, I developed pneumonia and was unable to swim for two weeks. Because of course—Murphy’s Law, right?

But yesterday, it was back to the pool for me. (I’m just waiting for my exercise equipment to arrive and then I’ll definitely go back to the gym, too. Mean voices in my head be damned.)

Are you a member of a gym? How much does it cost you? How often do you go? What gave you the push to become a member? How did you know it would be worthwhile?