53

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

You’re an effective self-advocate, and that will continue to make a positive impact on your healthcare and recovery. The fact that your focus after diagnosis is on recovery is so important. I’ll share some of my story. I hope it’s encouraging. It starts off dark but has a happy present.

It took decades of suffering and eventually paralysis from spinal cord damage for me to get a diagnosis. Only then did I become a decent self-advocate. I had to fight ridiculously hard for the MRI that led to the first clue in my diagnosis. When I was diagnosed I thought my life was officially over. My first significant episode of PTSD surfaced then.

When I was diagnosed and the reality hit that it was worse than anything I catastrophized, the dam broke. I started having flashbacks to being sexually assaulted in hospital, flashbacks of waking up during surgery, nightly nights terrors of being held captive by my stepfather. I developed a phobia of doctors, medication, and hospitals. I thought I was losing my mind as well as my mobility and physical health permanently, and that there was no way to escape the downward spiral.

Since then I’ve found effective mental health therapy, treatment for my physical illness, have had surgeries go well, and have found a healthy work:life:rest balance that keeps me in as good shape as I think I can be. I’m walking again, slowly and carefully but enough to get by, and in a manageable level of pain. PTSD is still here but under control.

In middle age I feel better than I did in my 20’s. I’m happy with my life now. It was worth the fight to get where I am mentally and physically. What you’re going through isn’t easy but getting to a stable place is possible, especially with a great attitude like yours.

[–] KBash [OP] 2 points Edited

I'm so sorry to hear what's happened to you, and so happy you're doing so much better! I've been there too, with medical trauma and fear of doctors, although not sexually assaulted in the hospital- that's awful, really impedes your ability to get medical care, and I'm so sorry that happened to you.

I'm turning 38 in less than a month. I was raped and abused right before I was turning 33. I'm pretty angry, because I was just starting to recover from and process previous rape and domestic violence, which is why I think I made such a perfect target for that guy (I've learned a lot since), and then I had lose 3 years of my life- one to unrelenting PTSD, 2 to still dealing with PTSD and an autoimmune disorder on top of that- and now I'm finally getting my Hashimoto's under control, I am developing another, more serious one.

5 of some of the most important years of my life!! I really wanted to have children, back then, at least; now I am not so sure. But I doubt I even can at this point, what with my health and my age, and just getting out of a relationship.

The man who hurt me 5 years ago is not the same man (thank God) I just got out of a relationship with. I was struggling and drowning for three years, then felt better and fell in love. Unfortunately, the man I fell in love with was really fucked up, as I've realized. He hurt me badly, and frankly considering he knew what I'd gone through it is a bit inexcusable; but it was subconscious on his part, not on purpose to be abusive. He struggles seriously with ASD and also depression, and was legitimately hurt by his ex-wife, who is not a good person. Nevertheless, none of that is my fault. It was unkind of him to treat me as he did. Stupid, too, because he loves me. He's pretty upset I'm leaving. I'm glad I am, regardless of any feelings. Feelings shouldn't come into play when someone is simply unsuitable as a partner, and at the moment, he is. These last two years have been incredibly stressful, and haven't helped my autoimmunity (granted, the pandemic really compounded the stress; but it was stressful since summer/fall of 2019, when we began dating, although I didn't realize or at least acknowledge it at the time).

I feel like my middle years will be much better too, now that I've realized what happened to me in my youth was not my fault- all the rape and violence I experienced, since I was a teenager. I've come to terms with it, and also realized my own worth and what I want. I've grown up a lot.

I'm upset I likely won't have kids due to all this, but it may be for the best, especially of course now with my health conditions, but even before.

I think mid-life will be much better, and when I take definitive steps to get into the best shape possible, I will feel a lot better than I have in a long time, too!

I'm so glad you've made such a good recovery, after such a difficult time! Thank you for the moral support and encouragement. I can do it, too.

I wish you luck and continued healing. <3