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, that if I’m not seeing the positive in the things I’m still able to do, that well, I’m just not grateful or positive enough.
That is the power of stigma. And let me tell you, I am tired of it.
I wasn’t diagnosed with lupus, fibromyalgia, Raynaud’s disease or Sjogren’s syndrome until I was 28. But for years, I struggled medically, not knowing or understanding why. I cannot say that having answers or diagnoses has made it any easier. I feel some days, it’s made it worse. You’d think having an answer means having a treatment, treatment makes you better, doctor’s appointments end, life finally moves on. As someone who also has post-traumatic stress disorder, I unfortunately knew better once I was diagnosed.
That is not the case with autoimmune disorders. I am trapped in this body that one day, or for one extended period of time cooperates, and then for a month or so does nothing that I need it to. It lets me down. It tests my patience. It pushes me into hole that I can’t scramble out of. And a lot of the time, that hole is very dark.
After my diagnosis, I mourned the person I used to be. I still do. It is even more difficult to accept the life you need to adjust to when you’re in a flare-up. Flare-ups for me are vicious. I will never be able to explain the pain that is shooting through my body every day.
Currently I cannot eat solid food, and have been on a liquid diet for over a month. I have been trying to keep up with going to the gym, because if I don’t my joint pain is even worse, but even when I’m there I feel like I just can’t do anything. I cannot sleep because I lay in bed and sob from the pain. I cry because I’m alone. I am that type of tired you just can’t explain to anyone. My Methotrexate, which I take twice a week, is making me more sick than usual. I don’t know why. I’ve started missing work because of it. And that means I’m disappointing people.
My body disappoints me. In turn, it disappoints everyone else. In the end, there are days where I lay in bed and I can’t imagine going on like this anymore.
I have incurable, painful diseases, in which the treatments are less than ideal and are limited. I have lost friends because I am “too much.” I am no longer the friend to people I want to be. My life at times is overcome with doctors appointments and medical bills.
I feel when people ask me what’s going on with me, they don’t want to hear what truly is. They already know I’m chronically ill. I’ll be this way forever. So, why talk about it? I feel burdensome to others because the truth is, I feel burdensome to myself.
I never asked to have to slap on a smile every day, to go to work, to grind as hard as I can because I have to make sure I keep my job because I know I’ll miss time. If I don’t seem like I’m worth it to my peers and supervisors, I am so fearful I’ll be let go.
I never asked to be in pain every day. I never asked for scary diagnostic tests, to feel like I’m sitting around waiting for bad news every six months that I walk in my local diagnostic center. I never asked to have my appearance change so drastically that sometimes looking in the mirror makes me want to smash it. I can’t stand the person looking back at me because my hair that I’ve lost from my treatment growing back isn’t my hair, and yet I can’t get anyone to truly understand how awful that feels.
But everyone wants me to be positive. Because apparently I’m going to “feel better.”
There is no better. There’s flaring, and there’s not flaring. And people need to understand the emotions we feel when we flare. Being in pain every day does something to you. It eats at you and tests you in ways you didn’t think you could be tested. And I am mad because I didn’t ask for it.
I didn’t ask to be sad over my bodies, to not only feel constantly disappointed by them, but also by people’s reactions to it. Sometimes, I get to be angry. Sometimes, I get to be sad.
I ask people to please not feel that they get to dictate how I feel, or how I react to my flare because they don’t understand what I am feeling inside my own body. They may not understand the depression that comes with losing friends, and ultimately feeling as though you lost yourself to illness.
Today, and this month, I am flaring. And ultimately, I am mourning. People are just going to have to be OK with that, because sometimes, things are just bad.
We as a society need to stop glazing over negative moments to fill them with unauthentic, false-positive, “hope” filled candy coated, sugary motivational quotes that make you feel better.
I never said I lost hope.