Chronic illness is not a gift given to me. It’s a curse, a poison that has killed so many parts of me and I’m very angry about it. I might scream, throw things, cry, despair, or just fall apart with anger.
Living with a disease that takes so much of you, from your life, from everything you care about most, is difficult and sometimes impossible. But in the end you find yourself hoping, wishing, even praying, you an atheist from head to toe, that a “crumb” of your life before the illness can be given back to you.
Living with a chronic illness is like fighting, clashing every day, every minute of your life with the Devil himself but, the fact is that you cannot bargain with the devil, he always wins, he is the strongest.
How many tears shed, how much desperation. To such an already compromised situation, depression is added, it’s all normal.
Being sick leads you to think that you have two possibilities: you can get better or you can die. But this is not the case with most chronic diseases. My diagnoses of fibromyalgia, osteoarthritis, psoriatic arthritis, arthrosis, spasmophilia, headache, I’ll stop here, the list is long, didn’t give me those two possibilities but only a condemnation to a life of pain. I can’t think of anything more depressing than that, can you? PAIN, PAIN, PAIN, only PAIN. But, after a while, you start to get used to it. Obtorto neck, you get used to it. You get used to the fact that everything you used to do, you can’t do anymore. Point. It’s blatantly obvious. But all those things you used to do that you suddenly can’t do anymore leave holes that can’t be patched, that’s depressing. And, it’s not always true that those holes can become new opportunities, this is a total bullshit cliché. All you can do is find ways to fill those holes – time, brain stimulation, fun, whatever is missing – so your body can bear it. It’s a slow process. But there will be something. Even if it’s not what we hoped for.
Then, so suddenly, comes the acceptance phase. Acceptance doesn’t mean you forget who you were before, it’s not that. Let me understand but, after a funeral of a loved one, do you forget everything about that person afterwards? Acceptance means that you have to be good at finding a balance, finding a way to remember who you were, without causing yourself more pain than you feel. It’s about saying goodbye to that person you were, so you can embrace who you are today. This is acceptance. Point.
Chronic illness is a cruel thing, and what we need to remember is that it truly takes something from each of us and that it is okay to grieve that “theft” and loss.
I don’t know about you but, what I will NEVER accept is silence, the dead silence of those who are next to you, the silence of those who say they love you and protect you, of those who believe that you are the same as when they met you and have not understood your problem, your desperation, your depression. I will NEVER accept the silence of those who believe you are “lucid”, of those who believe you are healthy, just because you move, breathe, see, observe, feel and they don’t notice that those eyes are not the same as before and that if they shine, perhaps, very perhaps, it is not the light of happiness but, because perhaps, very perhaps, they cried and cry every day for not being understood, considered and abandoned.