When I Have to Explain Intimate Details About My Health to People Trying to Help

Yesterday I did my back. In a nutshell, that means that I bent down to take a sock off, and the small of my back tweaked and pinched, and it was all over. I have Ehlers-Danlos syndrome, which means my tendons and ligaments are extremely fragile, and I hurt them easily and often over nothing. But back pain and back injuries are by no means just an EDS problem, they happen to so many people with all kinds of health issues, so I know I am probably preaching to the choir here.

A couple of months ago I wrote about the exhaustion involved when anyone with chronic health issues constantly has to make themselves extremely vulnerable to the medical world, in order to have any chance of getting help. It is tiring, but it is also overwhelmingly emotional. We constantly have to risk our bodies, our integrity, and our emotions and it is draining.

The last 48 hours have for me been a completely different kind of exhausting and a different kind of vulnerable. I have had to cancel absolutely everything, and people have been wonderful at both understanding and offering help. However, as I can’t even get myself to the bathroom on my own, as I cannot sit on the loo all my own, not everyone is up for that kind of helping and nor do I want them to be! Thankfully my husband has been able to drop everything and stay at home to care for me. Thankfully he is strong enough for me to lean almost all my weight on him as I get to the bathroom and he is strong enough to hold and balance me when I am there.

Who else has to share that kind of story, that kind of intimacy, in order to say thank you but no thank you, for the help? Only people who are in such vulnerable positions.

It has also been a really scary couple of days as I have always known that at any moment any part of my body can “go” and never recover. I already use a crutch or a wheelchair everywhere I go, but I don’t take that freedom for granted. I am so thankful for the independence in my own home that I still have. But as my wrists, elbows, and shoulders are unable to take any weight at all, I cannot get myself in or out of a wheelchair by myself.

When my leg or my wrist or my shoulder goes, it is agony, but I can still get to the toilet on my own. But I now know that when my back goes, I am in real trouble, and I don’t really know what that will mean long term. It is frightening.

We thought of checking in to the local hospital if I still can’t manage before he has to go back to work, but as I appear otherwise strong, when people “help” me, they often pull on my arms or lift my legs up, popping a joint in the process. I am frightened of nurses who don’t know my condition and helpers on airlines who accidentally damage me.

I am exhausted at all the offers and having to explain to people that simply having a wheelchair doesn’t fix anything. That I can’t get from my bed to the wheelchair on my own and I can’t even sit on the loo! I don’t want to eventually have a carer other than my husband; I don’t want to expose my body and my dignity to a bunch of strangers before I find one who can understand and help rather than harm me. I don’t want to have to explain to people all the time that it isn’t just that my back is sore, it’s that everything sucks right now and in ways that could make them feel gross if I tell them enough to understand!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Wavebreakmedia

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

Lonely child sitting on playground bench.

5 Tips for When a Child With Ehlers-Danlos Syndrome Feels Left Out of Peer Activities

At some point during childhood, every kid gets left out of something – a get-together with friends, a party, a study group, whatever. But when your child has something that makes them “different,” this usual childhood phenomenon can become even more of an issue. Our son Michael is 11 and was diagnosed with Ehlers-Danlos syndrome [...]
shocked young girl with X sign drawn on paper over her mouth

One Phrase Not to Say to People With Chronic Illnesses

“It could be worse.” If I could physically harm words or phrases, this particular one would be lying under some soil by now. Any version of it has been known to put me into a tailspin of emotions which I will never actually allow to show to whomever may have uttered the dreaded words to [...]
portrait of young beautiful woman with flowers

What No One Told Me About Ehlers-Danlos Syndrome

I have Ehlers-Danlos Syndrome (EDS). It affects the collagen in my body, and along with it comes dislocations, subluxations, chronic pain, and fatigue. I was diagnosed with this three years ago when I was 14, but I had a lot of other health issues. My EDS wasn’t that bad, so it got pushed to the back [...]
Nina outside in her wheelchair.

My Wheelchair Is Not a Prison

Since becoming visibly disabled in 2013, after several years in the invisible camp, I have been anxious about seeing people I used to know, and meeting new people. Not just the inevitable “what happened?” (answer: “technically nothing, I was born with this”) but the misguided sympathy I now get for being a wheelchair user. Non-disabled [...]