When I sit down and write to advocate for my illnesses, I feel this pressure that I always need to be positive. That if I’m not, if I do not see the positive things I can still do, well, I’m not grateful or positive enough.
That is the power of stigma. And let me tell you, I’m tired of that.
I was not diagnosed with lupus, fibromyalgia, Raynaud’s disease or Sjogren’s syndrome until I was 28. But for years I had medical problems, without knowing or understanding why. I can not say that having answers or diagnoses has made it easier. I feel that some days worsened things.
You would think that having an answer means having a treatment, treatment improves it, appointments with the doctor end, life finally advances. As someone who also has a post-traumatic stress disorder, I unfortunately learned better once I was diagnosed.
That is not the case with autoimmune disorders. I am stuck in this body that one day, or for a prolonged period of time, cooperates, and then for a month or so it does not do anything for which I need it. Disappoint me. Test my patience. It pushes me into a hole I can not get out of. And many times, that hole is very dark.
After my diagnosis, I regretted the person I used to be. I still do it. It’s even harder to accept the life you need to adapt when you’re in an outbreak. The buds are vicious for me. I will never be able to explain the pain that runs through my body every day.
Currently I can not eat solid foods, and I have been on a liquid diet for more than a month. I’ve been trying to keep up with going to the gym, because if I do not, the pain in the joints is even worse, but even when I’m there I feel like I can not do anything. I can not sleep because I lie on the bed and complain about the pain. I cry because I’m alone.
I’m so tired that you can not explain it to anyone. My Methotrexate, which I take twice a week, is making me sick more than usual. I do not know why. I started missing work because of that. And that means that I am disappointing people.
My body disappoints me. In turn, disappoints everyone else. In the end, there are days when I lie in bed and I can not imagine continuing like this.
I have incurable and painful illnesses, in which the treatments are less than ideal and are limited. I’ve lost friends because I’m “too much”. I am no longer the friend of the people I want to be. My life is sometimes overtaken by medical appointments and medical bills.
I feel that when people ask me what is happening to me, they do not want to hear what it really is. They already know that I am chronically ill. I’ll be like this forever. So, why talk about that? I feel annoyed with others because the truth is that I feel overwhelming.
I never asked to have a smile every day, go to work, try as hard as possible because I have to make sure I keep my job because I know I’m going to waste my time. If it does not seem like I’m worth it to my colleagues and supervisors, I’m so afraid of being released.
I never asked to feel pain every day. I never asked for diagnostic tests of fear, feeling like I was expecting bad news every six months that I walked in my local diagnostic center. I never asked that my appearance change so drastically that sometimes looking in the mirror makes me want to crush it. I can not stand the person looking at me because my hair that I lost because of the treatment that is growing is not my hair, and yet I can not get anyone to really understand how horrible it feels.
But everyone wants it to be positive. Because apparently I’m going to “feel better”.
There is no better There is flare, and there is no burning. And people need to understand the emotions we feel when we turn on. Having pain every day does something for you. He eats you and tests you so you did not think you could be tested.4 And I’m angry because I did not ask for it.
I did not ask to be sad about my bodies, not only to feel constantly disappointed by them, but also because of people’s reactions to him. Sometimes, I get angry. Sometimes, I get sad.
I ask people to please not feel that they can dictate how I feel or how I react to my flare because they do not understand what I feel inside my own body. They may not understand the depression that accompanies friends who lose and, ultimately, feel that they were lost because of the disease.
Today, and this month, I am burning. And finally, I’m in mourning. People will simply have to be fine with that, because sometimes things are bad.
We, as a society, must stop going through negative moments to fill them with false, falsely positive quotes, full of sweet and sugary, motivated by the candy that makes you feel better too.