Around Christmas time about two years ago, I had to get bloodwork done for a reason I don’t remember. When the results came back, I had to go to the hospital. I wasn’t too sure about what was going on, but my doctor had said I was at high risk for a stroke at the moment. And so I went.
I was diagnosed with what’s called idiopathic thrombocytopenia.
We’re going to shorten it to ITP for the remainder of this article.
What this means is that my antibodies mistake my platelets, the cell fragments responsible for blood clotting, for little foreign invaders and attack them. My bone marrow also stops producing them as much. It’s an autoimmune blood disorder that causes the number of platelets in my blood to be low, and at some points, dangerously low.
ITP is a relatively rare disorder, not too much is known about it. But what I know is that it makes my bruises bigger, and it takes like ten times as long for me to heal than a normal person’s body would. I get little red dots all over my body called petechiae quite often as a warning that my platelet level is getting low (I think my clusters of tiny red dots are kinda cute looking honestly, but they’re unfortunately not a good sign). If my level is way too low, I’m at risk of having a stroke.
It causes other parts of my body (the greatest thing about autoimmune diseases) to also malfunction from time to time. One time I woke up to my skin burning. By itself. Like peeling off of me. It looked like sunburn and it looked gross. My face got all red, chubby, and swollen too. Why? An autoimmune reaction, maybe a side effect? I don’t know.
The “idiopathic” part of ITP means that the cause is unknown, and quite frankly, so is the “cure.” There’s no way of knowing how long I’ll have the disease, or if I’ll have it for a lifetime.
I don’t believe the illness I have to be all that bad. I could have so much worse. But I didn’t know how much this illness was going to affect my happiness and my mental health.
Sometimes I want to throw my whole body away.
Being forced to experiment with medications and getting “it might work, might not” from every doctor that prescribes you something makes you start to hate your body, especially when the medications aren’t working how you hoped they would.
I didn’t want to live in my body anymore. I ruined it, and I longed for a new one. I can't always do the things I want to anymore. I can’t play volleyball with friends because my forearms would turn purple afterward. I can’t travel at times out of fear of getting hurt, or having an accident. I could be internally bleeding out and not even know. I can’t eat whatever I want, or whenever I want anymore because of my medication. I get sick more frequently and take so much longer to get better because my immune system has weakened. ITP comes with so many worries and restrictions that arise at various points throughout my everyday life.
Having to go get bloodwork done to check and see what my little platelets are doing inside of me is annoying and makes me anxious. Everything about my blood disorder makes me anxious, actually. I can feel myself internally panicking when I think I just might have forgotten my medication at home when on a trip or sleeping at a friends house.
Speaking of medication, do you know how many hoops my family has to jump through just to get them? Do you know how much these companies absolutely rob us for these little experimental medications? Or how many different doctors we had to pay to see? Thank God we have some O.K. health insurance. I’m lucky enough to have St. Jude’s to help us out with the payments for my medicine, but just the fact that my family has to spend so much money on me makes me disgusted with myself for being ill in the first place.
My medications have screwed up the hormones in my body. For example, as a kid, I was lucky enough to never have acne. Now, I get painful cystic acne all over my forehead and sometimes on my neck, which I try to keep under control with even more (now topical) medication (hooray for drugs). My health problems aren’t just internal and unnoticeable anymore, it feels like my problems are being literally displayed on my face. It makes me have issues with my self-esteem. I also began to have constant stomach issues soon after being diagnosed. Do we know what's causing them or how to fix them? No, of course we don’t. There are other, more unpleasant changes my body has made as a result of ITP, but I’ll spare you of those ones.
None of this is that bad, I know that. But every little thing builds up, and up, and up, and I hate myself for not being able to just have a body in peace. I wish it could go back to the way it was before.
I always had body image issues, not liking myself because of how I look. Now, I don’t like myself because of how I feel. Is it my fault that I have this? Did I do something to cause all of this? There’s not one hour out of the day that I don’t have to think about how what I am doing will affect my body, or how I could make things worse. That’s a tiring way to live.
I don’t think I have the right to feel the way I do.
So many people have chronic illnesses and disabilities that affect so much more of their lives. I’m still walking, talking, breathing, and eating. I feel like I don’t have the right to feel depressed because of the way ITP affects me. I don’t deserve to.
There will always be people who have it worse than me. I know the moment I try to talk to anyone about the way my body makes me feel, that’s what they’ll tell me. I get it. I understand it. It still sucks.
I have never told anyone that my illness causes me to have long episodes of depression. Not my family, not my friends, not my doctor, not even the therapist I had been seeing. There are not a lot of people who have ITP out there, so it’s hard to relate to anybody. I don’t want to be a complainer, so I keep my feelings to myself. I know this ultimately makes me feel worse.
So much is unknown about my disorder.
Going to the doctor’s is always a guessing game. I don’t know if my medication is truly working if I’m being quite honest. I’ve tried a lot of things. It's not even about which medicine will help cure my disease anymore, it's about which medicine will make my body more O.K. than before.
When I was first diagnosed, I was told that ITP that occurs in children (usually much younger than I was, but I was still technically a child) only lasts a few months. Six months at most maybe, then the body finally gets back on its feet, and it’s done with. That was over two years ago.
With two years and counting of “I’m not sure,” “try this,” “try that,” “maybe,” “whatever, we’ll just try a higher dosage,” etc., you lose a lot of hope. I don’t expect myself to get better anymore. I don’t know if I care about getting better anymore.
All I’ve been striving and struggling to do is have hope that this isn’t going to be forever for me. And if it is, so be it. That’s all I feel like I have left. It feels like someone pulled a plug out of my brain, and everything in there is swirling down a black hole and draining out of me.
I’ve taught myself how to get better on my own.
I had depression before I ever started having problems with my blood. It began when I was in middle school, for completely different reasons than my reasons today.
See, my depression when I was younger rooted from things going on outside of me, whether it was bullying, family problems, or the way I thought the world viewed me. Those are things that for the most part, I feel that I can work on, change, or improve upon.
Now, my depression is coming from something that I may never be able to work on, change, or improve. Now, I have to learn how to heal myself and heal my mind in ways I’ve never tried before. One of the very first things I learned studying psychology is how closely the mind and body are related, and how it is just as important for me to take care of how my brain feels as it is to take care of my body and it’s obstacles.
I’m not going to lie, I haven’t figured it all out yet. Some days are better than others, but every day is a conscious effort to bring myself positivity again. I know I shouldn’t hate my body because of something I can’t control, and I don’t want to feel like I have to anymore. I want to (and deserve to) love myself, and I will always make the effort to recognize that.