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I just got diagnosed with a serious disease. It’s in the early stages because I caught it myself, and I pushed for tests.

This is the second autoimmune disease I’ve been diagnosed with in the last four years. This one is much more serious.

My autoimmunity started after I suffered from acute PTSD for a year after rape and abuse by a man I dated.

I’ve also been in a really unhappy relationship for the past two years that did a number on my self-esteem. It took until last night to realize it wasn’t just being on the spectrum that made my ex-boyfriend spectacularly hurtful, seemingly without meaning to be, but his active resentment of women, after being deeply hurt by his ex-wife. He also has huge difficulty articulating his emotions, so he didn’t know how to say he was scared or unsure what he wanted, or felt we were moving fast; or anything else. He never knows how to articulate his feelings of confusion; instead, he takes it out on me. He’s also very sweet and loves me, but frankly, the way he hurt me when we dated, after a very sweet friendship in which he was very kind and also romantic- something he later denied- the particular way he made me feel bad, about my looks, was really inexcusable, knowing what I’d just been through, and what a tremendous risk I was taking, trusting him. And he knew.

Now, in a cruel coincidence, part of this disease is affecting my looks, specifically my face. It can even cause brain lesions, though that’s unusual. The systemic kind- which I do have the symptoms of, and is why I’ve been sick, when my Hashimoto’s seems to be getting better- can make you really, really sick, and even be fatal. Or it could be minor, and it will be fine.

I may have to take immunosuppressants. I am worried about that, what with the side effects and also the pandemic.

I am worried about how much hard work I have to do soon to survive. What if I’m not feeling well?

I’m very angry with the rapist. He has also raped or otherwise abused or assaulted many other women. Nothing has been done about him. He’s still walking around a free man, like most of his brethren.

Meanwhile, now PTSD is understood as a brain/body disease. It raises cytokines considerably, causing inflammation in the body, predisposing the sufferer to all sorts of diseases, particularly autoimmune diseases and cancer.

I’m pretty angry, and more than a little discouraged.

I could some support, advice, encouragement, commiseration, or anything positive or uplifting, really.

I am looking forward to the future. I am moving, and making some big changes in my life right now. I want to try to be positive.

I am also staying on top of my tests and healthcare, and doing everything I can to reverse this disease.

Please help me be positive! I want to recover from this with no harm done.

I just got diagnosed with a serious disease. It’s in the early stages because I caught it myself, and I pushed for tests. This is the second autoimmune disease I’ve been diagnosed with in the last four years. This one is much more serious. My autoimmunity started after I suffered from acute PTSD for a year after rape and abuse by a man I dated. I’ve also been in a really unhappy relationship for the past two years that did a number on my self-esteem. It took until last night to realize it wasn’t just being on the spectrum that made my ex-boyfriend spectacularly hurtful, seemingly without meaning to be, but his active resentment of women, after being deeply hurt by his ex-wife. He also has huge difficulty articulating his emotions, so he didn’t know how to say he was scared or unsure what he wanted, or felt we were moving fast; or anything else. He never knows how to articulate his feelings of confusion; instead, he takes it out on me. He’s also very sweet and loves me, but frankly, the way he hurt me when we dated, after a very sweet friendship in which he was very kind and also romantic- something he later denied- the particular way he made me feel bad, about my looks, was really inexcusable, knowing what I’d just been through, and what a tremendous risk I was taking, trusting him. And he knew. Now, in a cruel coincidence, part of this disease is affecting my looks, specifically my face. It can even cause brain lesions, though that’s unusual. The systemic kind- which I do have the symptoms of, and is why I’ve been sick, when my Hashimoto’s seems to be getting better- can make you really, really sick, and even be fatal. Or it could be minor, and it will be fine. I may have to take immunosuppressants. I am worried about that, what with the side effects and also the pandemic. I am worried about how much hard work I have to do soon to survive. What if I’m not feeling well? I’m very angry with the rapist. He has also raped or otherwise abused or assaulted many other women. Nothing has been done about him. He’s still walking around a free man, like most of his brethren. Meanwhile, now PTSD is understood as a brain/body disease. It raises cytokines considerably, causing inflammation in the body, predisposing the sufferer to all sorts of diseases, particularly autoimmune diseases and cancer. I’m pretty angry, and more than a little discouraged. I could some support, advice, encouragement, commiseration, or anything positive or uplifting, really. I am looking forward to the future. I am moving, and making some big changes in my life right now. I want to try to be positive. I am also staying on top of my tests and healthcare, and doing everything I can to reverse this disease. Please help me be positive! I want to recover from this with no harm done.

20 comments

I'm sorry to hear that you've had to fight so hard for answers. I have PTSD myself and have battled cancer so I understand completely the brain/body link! Sometimes what helps me when I don't know what to do with myself is just practical organisation things as my mental health spiral if I am not busy. I have put all my medical letters into sheet protectors organised in a binder. I have a paper diary and also use Google calendar to remind me of appointments. I try to follow-up especially tricky medical appointments by emailing the surgery/practice afterwards with a summary of what was discussed for my own records - don't be afraid to tell your doctors to ensure they record xyz in your file. Get yourself a good notebook and write down questions you want to ask about your condition or treatments.

You are going to have a wonderful life ahead once you're on track with all the changes you want to make and you have the right treatments. You're proactive, you're doing all the things you need to do, you've got this! I have found the Mediterranean diet helpful to manage inflammation; I think it's worthwhile seeing what supplements to take, like tumeric. I also find guided meditation helpful to manage my stress and deal with flashbacks/intrusive thoughts as I really struggle with sleep. The main exercise I do is walking and I bet you'd find that a great stress reliever.

This is not a nice thing that's happened but hopefully you can turn it around into an opportunity to take really good care of yourself. It took me years of fighting against my health to finally come to terms with the fact that this is my situation, it isn't fair that other people don't have to do it but ignoring my body isn't helping me either. Big hugs!