May is Ehlers-Danlos Syndrome (EDS) awareness month, and since my wife suffers with it daily, it seems appropriate to write about it. For more information on EDS, check out:
My wife, my Domme, lives in daily pain with EDS. Some days are better than others. There are times when her pain is low, we can go paddle boarding and have a semi-normal day. Other times, she’s in bed all day crying on and off from the excruciating pain of a particularly bad dislocation. It’s a challenge when picking up a heavy book can take a rib out of socket. It’s an ever-present threat.
This has accentuated our D/s relationship in some ways and hindered it in others. It might be obvious to say that the opportunities for service are endless. On the other hand, anything physical is very dependent on how she feels and even then limited in intensity, duration, or variety.
And while all of that is challenging to me, and I’m not minimizing the challenges caretakers face coping with chronic illness, I cannot imagine what it’s like to never have a pain-free moment. I thought I would die and take everyone down with me when I had a dry socket from a wisdom tooth extraction. I can’t imagine living daily with ribs, shoulders, hips, bones-you’ve-never heard-of, dislocated or twisted slightly out of place.
She is the strongest woman I know and almost always faces the day with a smile. I have a tremendous amount of respect for her.
Some things I’ve learned supporting a partner with a chronic illness:
- You have to be flexible. Things can change in an instant.
- You have to be strong. Caring for someone else in any capacity is not easy, and sometimes you’ll find strength you didn’t know you had.
- Empathy is critical. They didn’t ask for their illness, and they deal with something daily that you’ll never likely be able to fathom.
- Self-care is a must. Submission alone can be draining and caring for someone with a chronic illness even more so. You have to take time for yourself to re-charge and relax. You can’t be there for someone else if you’re not there for yourself.
- You will face despair. And it won’t last. Some days will feel horrible, like life is terrible and depressing and the chronic illness is swallowing you both alive. But those days pass, you get stronger, you move on, things ebb and flow.
- Other people won’t get it. And you don’t have to explain it. The world is full of people stuck in tiny boxes. People are going to give dirty looks because they don’t get that some people need to use a handicapped spot when they’re not in a wheelchair. You will have a crazy aunt who thinks she can be cured with nutritional supplements, or even worse, the right religion. Let it roll off and move on. You owe them nothing.
- It’s painful. It’s so hard to watch someone you love deeply suffer, and you can do nothing to fix it. It takes time to accept and it’s never easy. Watching your partner in pain will never become easy.
I’m sure there’s more I could add, and more I will learn in the future, but those are a few I was thinking about. And for EDS specifically, and “invisible” illnesses, in general, please think twice before judging someone who can’t keep a job or uses the handicapped spot and “looks fine.” You may never know what they deal with day in and day out and all they need is love and support, not judgement. For them, the world is a painful place.