Post Traumatic Stress Disorder is what I have lived with for many years. I am fortunate, very fortunate, to have found someone to work with who really gets it and to be in recovery, to have learned how to manage my post-traumatic stress disorder by many every day and common sense (once you learn them, not before) self-care activities and methods. I can manage triggers much better, can figure out when I need to take a break or distract myself or talk it out or think or write it out for myself or just take a rest or a walk or reach out to help someone else, often the most useful way of taking care of myself but not always.
Keeping things in perspective is important and very helpful to me personally. Reality testing–is this as scary as I feel it is? Can I do it even if I am scared? Can I get support or do I need support? Asking myself what I need and what will help me get through keeps me steady. It doesn’t mean I don’t have times when things get rough internally. But I am so used to that and have learned so much that I can handle much more than I ever thought I could on my own.
I have also learned how ordinary and expected many of my reactions are to situations. What I used to see as a symptom is often a common response to a difficult and scary situation, in fact my reactions to many situations are the same as many people’s reactions, I have learned to try not to “patholigize” every feeling and every fear and every sadness. For instance, very few people are not afraid of surgery or would not be scared if they had reason to believe they were having a heart attack. (I wasn’t, I’m fine, it was a rare complication of anti-rejection drugs). Most people are going to be very upset if they lose a dog to death or face the need to choose between two dogs they love becaue those two dogs can not get along no matter what you try and one has to be re-homed.
I have noticed that many people assume because my kidney failure was due to the use of lithium for 14 years (strangely enough I said 12 years for years and only recently corrected my arithmetic and realized it was 14 years) that I must have bipolar disorder. I do not. I had PTSD when I was mis-diagnosed with bipolar disorder but because I was not very questioning and because I believed the experts, it took a very long time for me to realize and accept that this did not apply to me, even though many experts questioned my diagnosis along the way. I was determined not to be “one of those bipolars who go off their meds” as I heard and my family heard all too often, that horrible and damaging stereotype, as soon as I was mis-diagnosed. I was going to be the exception. I would never listen to a doctor who questioned whether I was correctly diagnosed as I had heard warnings from other people of the dire consequences to them of doing just that. I was stubborn and determined and scared all at once. Scared of being seen as “one of them”. Stubborn about not fitting that horrible and prejudiced stereotype. Determined to be a model patient and success story. I was wrong. I failed to listen to my own instincts. I accepted the labels and boxes of others and not my own experience and my own feelings.
I am very grateful not to still be in that box. I am grateful to experts who were gentle with me as they led me to understand and accept that what I had been told was not true about me. I am grateful to a doctor who stuck with me as I resisted ceasing my last mood stabilizer years ago even though it had warnings out about it that I should take seriously.
I am not grateful for having kidney failure due to a wrong diagnosis. I am not grateful for in the past and occasionally in the present being treated differently and with less respect in medical settings which I have no choice but to be in anymore. I am not grateful for attitudes from anyone that say “get over it” or on the other hand “you are other, you are less, you are not one of us”. I am not grateful when people feel okay about asking me very personal questions they have no reason to know the answer to when I (rarely) disclose that I have PTSD. I understand the instinct to ask what happened, I do not attribute bad intentions to those who ask what caused this in you or who ask what were you doing that caused you to be misdiagnosed. People want to know and understand and that is not coming from a bad place in anyone. But my personal history is mine and shared only with those I trust very much and those to whom I am very close and not even to all who fit in those categories. I think I share a lot actually, but some things I will not share and that is my choice to make. I am resigned by now to the fact that there will always be those who will ask or those who will assume I am at fault for my wrong diagnosis, that I must have been “doing” something or it wouldn’t have happened.
Strangely enough I am equally bothered when people assume I am “good” or “better than others” or virtuous or something along those lines when I share my great luck at being able to get off of dialysis about 9 months after I got on it and stay off of it for over a year and a half. I know where this comes from in me though, it is not strange to me. I was much younger when AIDS hit my home town of Philadelphia and hit the United States in general and people were dying before the cocktail and I listened to all the folks making distinctions between people who had AIDS based on how they got it, even asking people how they got it as if it were their business. Even before any of us had heard of AIDS, I was disturbed by a story from a former therapist of mine about her father’s death–and yes I now know she should never have shared it with me–how determined she was to get the doctor at the time of her elderly father’s death to tell her and her mother that it was smoking cigarettes that killed him and how angry she was that the doctor would not do that. From memory, he was old, he had many medical problems, his cause of death was complicated and not clear cut as is so often the case both in death and in life. But she wanted to blame him. She was grieving, I get that, when people are grieving they are not themselves. I do not blame her now. But it made an impact on me. It made me think early on about how we talk about people and their illnesses and disabilities and their deaths. I came to the maybe simplistic conclusion/statement that no one deserves the death penalty for “fill in the blank” with smoking cigarettes, drinking alcohol, using recreational/illegal drugs, not eating a healthy diet and on and on. We all will die. We may hasten our deaths by our actions or we may not. We may be lucky or we may be unlucky. I knew and admired a man who lived to 96 who smoked into his 50’s and drank decades beyond that. My great-aunt smoke until she died from complications from an earlier car accident at 83. And little children die of dysentery in places without clean water, people are dying of AIDS all over the world due to lack of medicine and lack of protection, people who never smoked get lung cancer, people who never drank lose their livers, death is not fair, death is never deserved, death is death and comes to us all even if we do everything “right” all the time every day of our lives, short or long.
There is no hierarchy of cause of death. There is no hierarchy of disability. We all will die and if we live long enough we all will face disability and illness.
