Lees deze post in het Nederlands.
One of the things that I struggle with regarding my chronic illness, is the perpetual feeling of guilt. Specifically, because there are so many little things that I can do that, more or less, influence my health, I also always feel like I could have done more.
That I could have stopped myself from scratching; that I could have prevented having a rash at all. That I am perpetuating a vicious cycle that would not be there otherwise. Secretly, I actually believe that it’s my own fault that I am struggling with my eczema.
Unconsciously, this idea is being supported by my environment. Though well intended, people KEEP giving me the unoriginal advice that I should not scratch. Of course, I should not scratch. Of course, I have to keep myself in check. Like I don’t know that… Unfortunately, this also gives me the unintended signal that it’s my wrongdoing that got me into this horrible situation in the first place. And over time, this thought got deeply ingrained into my brain.
But it is not true. I am not the cause of my misery. Of course, yes, scratching my skin until it breaks has a negative impact. Yes, it makes the itching worse. But that’s all of it… it makes the itching WORSE.
Now that the MTX finally enables me to actually influence the severity of my disease, I managed to end up with a completely clear skin a few times. In combination with my hormone creams my skin is so calm that I can keep myself from scratching long enough for all the wounds to heal. Amazing!
But then inevitably, I end up on a hormone-cream-free day and will have a minor setback. The difference these times, however, is that I enter these unprotected days with an undamaged skin. Which means that I can finally find out what the actual effect is of the disease, without the added effect of the rash.
And what gives… it itches. My skin itches. On its own… the whole time… spontaneously… without a cause. Even if my skin is in perfect condition, I am stuck with fucking itchiness.
And that realisation is… extremely validating! Because it takes so much pressure off the whole situation. It means that it’s OK to be sick of the perpetual maintenance, that it’s OK to just really hate the disease. That it’s not my fault, but that it’s just a shitty situation that I happen to be in.
Because sometimes… sometimes it’s just really great not to be able to do anything about it.