The Mighty Logo

5 Things I Wish People Understood About My hEDS Pain

The most helpful emails in health
Browse our free newsletters

When I was diagnosed with Ehlers-Danlos syndrome, hypermobility type (hEDS), it felt like everything in my life suddenly made sense. My entire childhood was filled with injuries and experiences that should have been massive red flags for hEDS, but because I’m from an area devoid of any specialists, and very few good doctors, it took a long time to get a diagnosis. In fact, I had to drive seven hours to the Mayo Clinic in Jacksonville to get the diagnosis. But being able to put a name to my experiences didn’t actually fix anything, it just made things make sense. But still, there are things people don’t realize about the pain I experience, and sometimes it’s hard to explain them.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Here are five of those things I wish people understood. There are many more, but these are the ones that are hardest to get across.

1. The pain is always there. Yes, you read that right – always. There are days when it is bearable, and days where I can do little more than breathe because of the pain. If I’m out and about it’s safe to say that I’m hiding how I really feel beneath a smile and some lipstick. I’ve become a master of hiding my true feelings because it’s still not widely accepted to openly explain how much pain I experience.

2. My pain scale changes daily. In fact, it can change from hour to hour. Some days, you could drop a brick on my foot and I’d probably just say “ow.” Other days, hip checking the counter in my kitchen sends me into tears. This can depend on a lot of things, like:

Did I sleep well last night?

Is my medication functioning properly?

Is it a day where I’m overloaded with pain, so that the smallest thing is excruciating?

It’s impossible to predict from day to day what the scale will do.

3. If I cancel on you, know that it’s because my pain level has spiked unexpectedly, or I’ve gotten injured or sick. I hate having to flake on plans, but a I said, it’s impossible to predict what my body will do. I’ve had my knee collapse while hiking, and even once broke an ankle by simply missing a step. That last one meant I had to cancel on going to see a show with a dear friend that I’d already reserved tickets for. My body is incredibly unpredictable, and my pain levels are difficult to deal with.

4. If I don’t respond to texts or calls, chances are I’m just too tired to do it. Being in constant pain is exhausting, and it can really affect my ability to keep up with conversations. Sometimes I zone out during phone calls, or fall asleep when texting someone and take a long time to respond. I promise I’m not ignoring you or trying to be rude, I’m just in a constant battle with my body, and it causes fatigue. It is truly exhausting to be in pain all the time.

5. If I tell you I’m in pain, I’m not just complaining. I need a friend. I’m very lucky to have a support system. But, sometimes if I’m talking to people outside my immediate group (who is very aware of my situation), I’ll mention I’m in pain, and that person may not realize that I’m trying to help them understand how my life is – not just complaining. And when I say I’m in pain, I don’t mean that I just stubbed my toe. If I’m mentioning it, it’s because it’s bad, and I need to either distract myself from it, or talk through it so I can decide the best course of action. I don’t mean to sound like I’m complaining, I just need support.

I’m sure I’m not the only person who has pain like this, and I know I’m not the only one who wants people to understand. I’d love to hear in the comments what others want people to understand.

Getty Image by taehoon bae

Originally published: June 25, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home