3 thoughts #5: On medical neglect, boredom and psychologists
3 thoughts #5: On medical neglect, boredom and psychologists
Read or listen to my three thoughts of the week.
Hi! How is everything with you this week?
First of all a big welcome to all the new subscribers! Honestly, I love seeing more and more people here. You give my life a lot of meaning.
Here are my 3 thoughts of the week. You can choose to listen or read it below.
We often scold patients for using alternative therapies, but the truth is that patients partly use these therapies because the medical world has neglected our bodies. This is one of the reasons why more women use alternative therapies than men. Medicine has failed our bodies.
I’m struggling to find words to describe how the boredom of being mostly bedbound feels, other than it’s a very different, much more visceral and intense kind of existential boredom than when I was able-bodied.
Disabled and chronically ill people encounter a range of sources of trauma, such as medical trauma and ableism. I have met very few psychologists who were trained in these issues. Some enforced the trauma because of lack of insight and training. We need more psychologists trained on these issues.
What about you?
What is your relationship to boredom like? How would you describe your particular boredom?
Have you experienced not being listened to or believed in the medical setting? What do you feel were the consequences?
How have you been supported by a psychologist? How have you not and what did you wish they said or did instead?
P.S Did you read my blog post about what it’s like to live with severe ME/CFS? There are also some great comments under it. On Wednesday you will get a new blog post.
I think there is sometimes a contradiction 'you aren't doing enough, why haven't you tried x, y and z' or 'it's in your head'. But then when you use alternative therapies, you're judged for that! I've learnt just to follow my heart and how it feels, does it feel good? Yes, do it. Does it serve my beliefs? Yes, do that. It's sometimes hard choosing what's right in the medical system as sometimes I feel like it's traumatic and they don't even want to help, or can help!
Bedbound boredom is unlike any boredom I have ever experienced. And it’s so hard to describe (like you’ve said). At my most sick I remember staring at the ceiling for 45 mins at a time, just completely zoned out and so depressed about everything that was happening. The only way I can combat it is by reading. But of course there are days where I can’t read, and then I just have Netflix constantly running in the background. Being bed bound has completely changed my relationship with the word ‘bored’. I also look back to my previously able bodied self and when I thought I was bored and I think wow. You have no idea what boredom is Martha haha. You’re so right it’s so existential. At my sickest my lovely mum made sure there were a never ending string of flowers in my room so I could be visually stimulated even at my worst. Because being bedbound comes with boredom I feel like I’ve got to know myself so much more? I’ve never hung out with myself with nothing to do for this long (2 years and counting). Having nothing to do and not being able to move uncovers this whole other relationship with yourself? (at least that’s how it feels sometimes)
And alternative therapies! I have diagnosed ptsd from being gaslight so horrendously from medical professionals. Alongside my medical treatment I am also seeing a psychologist who specialises specifically in my condition and it’s been a game changer. I seriously don’t know what my life would look like right now if I didn’t have access to it. We do breath work, nervous system regulation, emdr, pacing - so much biopsychosocial. It has changed my sick life and I feel like I understand my brain so much more and most importantly can ‘cope’ with my diagnosis so much better. There is such a barrier to accessing health psychology which is so unfair, because it is just so expensive. Because when experiencing all the trauma anyone with chronic/long term health conditions, it’s not enough to just treat just the ‘physical’ condition. Our entire bodies have so much stored stress, anxiety, trauma that needs to be dealt with too.
There is one particular doctor encounter that haunts me every day. Despite every single marker of illness that hospitals look at (high temperature, low blood pressure, high heart rate, can’t stand up, seeing stars, unable to wee) he still told me I was lying, hysterical, made it up, and would never get better. I often wonder what my life would look like if I hadn’t encountered him. I don’t think I’d have as much ptsd as I do. I find it so hard to even comment on medical negligence here because it’s just so extensive and so prevalent in our community. And more importantly, so unbelievably cruel and unnecessary. Thank you for always writing such stimulating pieces. I’m sorry this comment is SO long you really got my brain going 💖