Where Does the Guilt Come From When It Comes to Health?

Today I caught myself doing it again: it’s one of those days – you feel sick, but not enough to stay in bed all day; you can actually get up, but your energy is just not enough and your body is not able to follow your mind, your endless “to do list.”

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

I grabbed my bag – the one with all the latest exams and medical tests – pulled my diagnosis out, and read it all over again: two pages filled with the story of my life, a long explanation of what Ehlers-Danlos syndrome is, specifically the hypermobile type, then the conclusion – yes, I have it, too.

It’s been two years since the day of my diagnosis, and although two years might seem like a long time (and yes, a lot of things happened in these months!) for some reason, sometimes it feels like yesterday. Sometimes it seems like I’ve just started to deal with this “thing,” with this explanation that is (finally) an answer, but at the same time it feels like a brick on my stomach.

I’m 34 years old, with a whole life filled with health issues: doctors who couldn’t understand what the problem was and told me just that, with honesty and warmth (very few) and other doctors who couldn’t understand me and for this exact reason didn’t believe me or worse, blamed me (many, too many).

I think it was mostly because of this kind of feedback, received many times year after year, that I developed a deep sense of guilt for all the things that somehow I found myself unable to do anymore. I was a straight-A student, a tireless worker – even if I had to stand up for eight hours in a store with knee-braces and already in pain management at 18 years old.

I was the plate spinner: the plates never fell, if anything I was able to add one plate more whenever it was necessary. I did that with the absolute belief that everybody felt like I did; that, “OK, maybe I am a little bit more unlucky with my health, but hey, it’s normal to have a body that aches everywhere all the time! Shut up and deal with it, OK?”

I grew up like this. Sometimes in my youth, when I complained about some pain that was actually excruciating (a few times compared to what I was going through), there were people who told me “You always have something to complain about!” like that was my choice, like I had a very low pain threshold. Too bad it was the exact opposite, but they didn’t know; I didn’t know.

Then, slowly but inevitably, something changed: I couldn’t ignore all of my pain. I just couldn’t sweep every single ache I had under my personal rug and the more it happened, the more I felt my guilt grow to become something almost unbearable.

Now I know: I know there’s a reason behind this life, behind this pain. I know it and I feel it, when the pain is so strong that I can’t even get out of my bed.

But on days like today, I fall off the wagon all over again. I’m sick, but not enough to stay in bed; I should do things, but I can’t; and something inside me whispers, grins, tells me that maybe – just maybe – I’m sitting back when I should do more, that I’m not doing enough.

At this point, I look for my diagnosis. I read it all over again to remind myself I have every right to feel sick without having to answer to anybody, without asking permission, without guilt. Sometimes this helps; other times the response is too conditioned for me to stop it. Thirty years of not knowing can’t be cancelled out with 24 months of awareness. And for this reason, I find myself caught in the middle of “cut me some slack” on one hand and “you’re not doing enough” on the other.

I’m not sure when I will be at peace with this part of myself. I only know that right now guilt walks with me every single day, sometimes in a quiet way, sometimes in a louder and more judgmental way for all the things I didn’t do, for all the things I can’t do anymore. Guilt, that’s my taboo emotion. Maybe this is the biggest obstacle that keeps me away from real acceptance – assuming that really exists.

Right now acceptance comes in waves, for very few seconds. It’s there when people around me remind me they will be there, no matter what may come. It’s there when, despite all of my limitations, I still manage to achieve something – maybe not in the way it could have been, let’s say, five years ago, but on the other hand with something more that comes right from the phase of life that I’m living.

It’s not there in days like today: the days when I need to go back to my diagnosis, read it again and remind myself it is OK if I can’t do everything like I used to. Maybe it’s not OK that I still have to look for approval from a piece of paper, but maybe one day I will learn to give myself the time and the space to actually be myself without re-reading it every single time.