I think that it’s important to check-in because I don’t stop to do so very often during the week. It’s kind of cool to look back and see how things have changed. I think that I will occasionally including music or other things that reflect the current mood as I’m writing/editing posts. Feel free to check-in, I’d love to hear how ya’ll are doing. If not that’s okay too, thanks for being here 🙂
Mood – September 27th, 2019
Sad. It’s been a rough couple of weeks. I’ve really been struggling with my depression since the last flare/major episode that I had last week. I can relate to this song a lot.
Trauma and Our Voices
I don’t think that a lot of people realize that there are other sources of trauma outside of the physical symptoms of chronic illness. Negative societal standards, social norms, and ableism are ingrained in the way that we interact with one another. So much, that may cause trauma or harm to someone else without meaning to. I did a little research and found out that chronic illness has some pretty traumatizing effects. Shocking, I know. It feels strange to actually have written pieces of work to back up what you personally experience. Physical “evidence” is quite hard to come by when you live with a chronic illness.
A study by Peggy Penn M.S.W. found that many people and their families become traumatized from the experiences of the illness. This is due to the fact that it can silence our outer voices and change our inner voices. By inner and outer voice, I mean the voice that we have in our head (inner voice) and the voice that we use to communicate to others (outer voice). Our voices are silenced when we avoid talking about our illness with other people because of social stigma and feeling ashamed. Ironically enough, Penn concluded that outlets such as writing help us to communicate and understand those thoughts and feelings with ourselves and others.
Sources of trauma
Personally, I’ve experienced a lot of trauma in doctor’s offices. I used to love learning something new and visiting doctor. It felt like a safe place because the doctor would be able to make you feel better and reassure you that everything will be okay. Going from doctor to doctor, you begin question your own sanity at the sake of their pride. Being repeatedly misdiagnosed and denied healthcare always made it really hard to go back. To be quite frank it made me feel crazy. There is this underlying fear of judgement for what you know to be real and have experienced. I still feel nervous and uneasy around doctors as deep down, I still remember what it was like then.
Whatever our personal shame may be, society confers more shame on us when we have an illness. A frequently pointed out assumption around illness is that it is evidence of our being defective. In the case of HIV or AIDS, Tom Strong (1997)reminds us of more injurious assumptions—that we are considered morally defective when we are ill; something must be wrong with us; we are not “whole.”Chronic Illness: Trauma, Language, and Writing: Breaking the Silence
I’ve had past experiences of people not believing that I have a serious chronic illness or misunderstanding me. This has given me some major social anxiety, I’m always fearful of people’s reactions. Sometimes when I would tell people about HKPP, they would react as if I had the plague and kind of disappear. It felt like they wanted to get as far away from me as they could. I have also had experiences where people would assume that I was just being unreasonable or selfish for advocating for my own needs. Quite a few times I had been told or made to feel like I wasn’t trying hard enough or that I simply wasn’t doing enough. People dismiss my experiences as me just being flaky or lazy. Sometimes I believe it. These experiences have left me with fear of negative reactions from people; that they won’t believe what I’m saying or won’t understand.
Isolation and Loneliness
It seemed clear to the father that their son struggled with the early signs of Parkinson’s, but this became a secret between the son and the father; each felt that they could not tell the mother. This isolation contributed to distancing in the family, with the father and son becoming too close to each other and the mother too far from both of them. What was surprising was that, over time, the father completely fell apart and could no longer function. When they came to see us, he was not as devoted to his son as he had been; he couldn’t remember things he had to do or conversations he’d had; his short-term memory was functioning so poorly that he could no longer perform in his job. This left the son with no one to speak to: both parents seemed to be ill, and at age 15, he was confronting his symptoms alone.Chronic Illness: Trauma, Language, and Writing: Breaking the Silence
One of the most traumatic things for me is the physical and social isolation. With HypoPP you can spend days or weeks at home or in bed with no idea of when it will get better. Socially, some people don’t understand it or do not attempt to. You disappear for weeks at a time, unable to talk to your friends at school or co-workers about it. When you come back you feel disoriented and out of place, suddenly thrown back into the familiar sounds and feelings of the outside world. Everyone asks where you’ve been and, well, you’ve heard how that goes.
During those weeks and days in bed or resting in your home, you don’t really have any way to reach out to people. And a lot of the time you don’t know how. How do you explain what’s happening to you to someone else unfamiliar with chronic illness? How will they react? Will they even be able to come and help you? Will they genuinely want to? So you don’t. You just stay at home with family, if you have them.
Maybe you don’t have any close friends because you’ve been out of work or school for so long. Maybe you haven’t had a chance to get to know your classmates and co-workers. Maybe your family lives really far away. Maybe you don’t have a lot of extra energy to put into dating or sports or clubs. What then?
(I’ll give you a hint, you’re doing it right now) As I’ve said before, it’s almost 2020, we’re basically in the future. We have the internet and it helps us to connect with other people that have some of the same experiences. Maybe it’s not the same as having a friend that lives near you, but it sure helps. I’ve met some of my closest friends via the internet and I hope that this site will be a place where we can all connect and maybe even find people that live in our area. Okay back to the serious stuff.
It is the repetition of all of these situations that causes trauma. Repeatedly having the same negative social interactions. Repeatedly being told that you are okay until you begin to question yourself. Being in physical and social isolation, day in and day out. Repeated phases of depression, isolation, loneliness, anxiety. Continually having our inner and outer voices muted. Repeatedly silenced and traumatized.
What do you think?
Have you ever had any similar experiences? What did you think of the article? It’s an interesting read.