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Chronic Illness and Trauma

Check-in

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.


Comfort Crowd is a song about someone who “buries” their sadness and pretends that they do not feel lonely, it’s my current favorite.

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

Doctors
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.

Society

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.

Repetition
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.

0 Comments

  • Miriam R Breslauer

    One thing I figured out for myself pretty early is to stop giving a crap about others not wanting to hear about my disability or what their true opinion of me would be if I was open about my disability. It is so freeing to think like this. I didn’t rub my disabilities in their faces, but I did explain why I could or couldn’t do X or Y.

    The advantage was it helped me keep my pride and built a strong sense of self.
    The disadvantage was it was used against me to deny me access to work opportunities and parties (food allergies make parties dangerous).

    Overall, it was the best thing to do for myself. I didn’t keep stuff trapped inside and it lowered others ability to use my disability to hurt me through ignorance. That way I knew that if they hurt me they did it on purpose.

    A close friend recently apologized for never inviting me over to parties at her apartment. She explained that even if she could perfectly control the food and other smells in her apartment perfectly, she couldn’t guarantee my safety in the apartment complex. I have been a little hurt that I didn’t get invites, but her explanation actually got rid of what little upset I had about it. It is hard enough for me to enter friend’s homes that know my food allergies perfectly and go way out of their way to make the air safe for me. It just isn’t possible in an apartment complex.

    My being honest with my friends in general helps protect against unnecessary ER trips even if it means I don’t have as much fun as I would prefer. This works for Periodic Paralysis too. Being honest about how to help me manage a paralysis attack, helps my friends give me proper treatment and lowers overall anxiety (although some will always be there). Some people find that they can’t deal with the Paralysis attacks and choose to avoid me rather than deal with them. In those cases, I learn that they were never really friends.

    Honesty is painful, but it does help process challenging things.

    • itsmurrgan

      That’s a good point, thanks for sharing 🙂 I realize the importance of honesty now, but it took me a while to get to that point. It would have tremendously help improve and even avoid some of the things that I went through in the past, but you live and continue to learn I guess. For me it became something that I did/do without thinking, shutting down was sort of a defense mechanism. Now that I am aware of it, I challenge myself to be more honest and open in person and online, even when it is uncomfortable or difficult. Or, even just taking note of an instance when I immediately shut down instead of just saying something. This blog post is just a way of sharing with other people some of the thoughts, feelings, associated with trauma outside of the physical aspects of chronic illness, give a different perspective (as well as process things for myself).

      Honesty is also a major part of the reason why I started this blog. When I’m struggling to find the words to explain why I can’t do things or what hkpp is and how it affects my life, I refer to my blog. It has helped to open the door for more honest conversations. Before this, a lot of my family was not even aware of my condition. I’m better at writing than speaking, so I figured it would be a good way to be more open with friends and family about what I’m going through and to explain to new friends what hkpp is. It also helps to verbalize everything as well because I had already written it down and processed what I want to say.

      • Miriam R Breslauer

        Sadly, much of my family beyond my parents weren’t interested in learning more about HypoKPP. I educated them anyways to the best of my ability since I was fairly certain that my mother and I were not the only family members with HypoKPP based on their symptoms. One thing I learned is I can’t force people to listen. However, 15 years later one of my relatives whom I suspect of having HypoKPP reached out to me and finally is getting testing for HypoKPP.

        My point is that even when you think that few others are listening or care, they might just be REALLY slow at processing information.

        • itsmurrgan

          Sorry that happened, I can relate. Although many of my family members are aware of this site, most don’t take the time to really read it and take in the information. Or if they are reading, they don’t really say much to me about it. Like they’re afraid to talk about it out loud or something. Or it makes them uncomfortable. Which is fine too. I understand that it is a lot to take in at once and everyone isn’t as comfortable talking about their health.

          Yeah, I understand what you’re saying. Also sorry for the late reply, It’s been really tough the last few weeks.

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