Disabled and chronically ill people encounter a range of sources of trauma, such as medical trauma and ableism. We need more psychologists trained on these issues.
I am profoundly grateful to have the psychologists I have now - the one I already saw from time time, and another from the same practice more experienced with clients who have chronic illness. They’re team treating me on an alternating rota to cover my various life challenges.
With CBT I feel like its a tool that can be useful but too many psychologists use what is a specific kind of screwdriver as a hammer - slow, painful and not really the right tool. And too easily used to persuade people out of their feelings and perceptions. I would hope psychologist would be trained enough to know the difference between helping people create a tiny bit of breathing room between themselves and their big feelings, and trying to shame and gaslight people out of this feelings!
Maybe we need to ask - and keep asking - “here’s a hypothetical: what would you change in your treatment plan if you 100% believed what I tell you about my lived experience?”
I can think this question up but whether I could say it to a mildly hostile healthcare worker... I’d need a lot of practice and the right amount of anger on the day. I feel tired just thinking about it.
I am loving these reflections, Michelle! And yes, CBT has been used lazily by some of my therapists, and as a general ‘just stop thinking that thought’, when my thoughts were huge and painful and needed expression and support. I love how you have good therapists now!!
In Denmark, a lot of therapists work according to the psychosomatic perception of ME, because that’s the official position, so it’s hard to find the good ones...
I really dislike CBT. It’s completely useless if you have any ability to self-examine. It just feels like manipulation eventually. If you are chronically ill odds are that you are already so in tune with your body and mind to catch those trip points that put you in a flare that you self-analyse constantly. It’s eye rolling. My appointment with the new therapist is tomorrow. She is disabled herself so hopefully we gel x
Thank you for putting words to something I have hought for a long time about CBT. I have felt it almost patronising and very superficial… I’m looking forward to hearing how it goes with your new therapist, if you want to share 🌸❤️
I had my first appointment and she is lovely. We will see how we go as first couple of appointments are getting to know you but she thinks Scema would be better to explore (which I also think will work but she brought it up without prompting) so cross fingers for me :)
Thanks for your interesting post. I tried CBT a few years ago and I also didn't find it very helpful. I tried a few other therapists but my experience was similar to what you describe - they have been keen to explore trauma in terms of my childhood, but have been at a loss as to trauma experienced as a result of chronic illness. I'm lucky to have found a therapist who has experience of and an interest in chronic illness and the impact it can have (eg medical gaslighting etc) - it makes a huge difference!
Thank you so much for sharing your experience! It sounds so similar to what I’m hearing from others too, this is a problem. I’m glad you seem to have found a good therapist now!! That’s special 🌸
Since getting sick I’ve always chosen psychologists or therapists who’ve got experience with or experience themselves chronic illness. As such, I’ve thankfully only had good experiences.
But reading that there is little literature doesn’t surprise me and momentarily lit a feeling of ‘I want to be the person that changes that’. I’m very impulsive and get feelings to do many projects a day (this morning was doing honey tasting experiences for tourism in my partner’s town ha). But what I’m trying to say with too many words is that lights a passion in me, to give more voice to people with chronic illness.
I had CBT at the beginning of my illness. It was basically think yourself better, and if you can’t do that then it must all be down the past trauma. One psychologist was very forthright that she made everyone cry and she was at a loss at how to make me do so. She never managed it. I also had NLP, felt manipulated.
Well, I took a considerable amount of time writing a reply. Then I messed up (somehow) and my post went off into the ether without me finishing it--only had a sentence to go. Oh well.
I just wanted to say you are deserving of an Atta girl! For getting the post written and posted!! I appreciate your effort and your kindness to use your scarce energy to make a post here. You need to put yourself as a priority so if you have readers who can’t understand that, they likely don’t fully understand what you are writing about. For the chronically ill, disabled and those who don’t have a (correct) diagnosis but can barely function on the daily, we do understand how difficult life is for even what used to be little things.
Therapists and what they bring to the table vary wildly. Keep trying until you get one that you feel comfortable with, helps you in *some* capacity and is worth your time. Time is not a renewable resource so that is the last thing you want to waste.
I enjoy your writing. But I’ll enjoy it more knowing that you are putting yourself first. As a subscriber, I’m going to be okay if you have to delay a post. Just like how I’m sure you understand if your chronically ill subscribers don’t get to read it the moment it comes through.
[she repeats to herself in a hushed tone -- slow and steady will place in the race.]
Oh no need to worry, I always put myself first. Most of my posts are written in advance so there’s never any stress in getting them out, and I take long breaks at least three times a year 😊
For me there are a few things that are key to anyone I work with (psychologist, bodyworker, yoga teacher, counsellor or any other therapist) - they need to be trauma informed and see me as the whole person that I am. The physical part of me, mental but like you mention above both the emotional and spiritual part also. In the end (by mutual parts) I stopped interacting with the healthcare service here in the uk and learnt more from the holistic psychologist on Instagram and her findings, work, teachings and Books. I’ve been fortunate to join the worlds top neurologists and headache specialists via the migraine world summit annual event combined with self study and research around rebalancing my hormones, brain restraining etc. I have worked one to one (support I’ve found essential and a major player in my road to recovery but I got pretty far on my own without initially)
That message sent before I had chance to finish it earlier 🙃 ....finding the support was body led, through understanding my needs (& having it confirmed that the nhs couldn’t help meet these needs - brutal at the time but now I see as a blessing in disguise) and listening to what my body was screaming at me.
A painful and misunderstood journey for sure, but one that’s taken me further than I’ve been led to believe is possible.
It’s been a Bodywork therapist/yoga teacher/breathwork/meditation guy I’ve ended up working with (I started referring to him as my healing coach).
The key thing that’s stood out about him though (that made me think he knew what he was working with from the chronic illness perspective) was that he didn’t tell me anything or pretend to have any answers. In doing so he didn’t question my beliefs and motivations to get well (or place any limitations or opinions on me).
It’s his ability to meet me where I’m at (relentlessly) and hold space for me (for all of me) that have kept me working with him for nearly 5 years.
I’m starting to realise that it’s not that we all need to rush out there and find a bodywork therapist (or a psychologist or anything else), it’s that we need to find space for all of us as a whole, be met where we at and given a chance to have all our needs (that make us whole) met and supported.
One thing it helps massively with is dealing with contradictory experiences, opinions.....even down to the science that so many of us rely on. Though science has been a part of my journey and study, it’s only played ‘a’ part. And I don’t reference it much in my writing (we have so many amazing writers in this arena). I don’t very often speak of it on a face to face basis either because like most of my interactions now, I get so much more from it when we’re coming from a whole body/whole person perspective.
I called it the fear bazookas, aimed at my chronic disease. The medical gaslighting is and was devastating. Thru their well meaning ignorance I have learned another definition of patient.
First do no harm my personal motto, in addition to my families “Hold Fast”.
I am profoundly grateful to have the psychologists I have now - the one I already saw from time time, and another from the same practice more experienced with clients who have chronic illness. They’re team treating me on an alternating rota to cover my various life challenges.
With CBT I feel like its a tool that can be useful but too many psychologists use what is a specific kind of screwdriver as a hammer - slow, painful and not really the right tool. And too easily used to persuade people out of their feelings and perceptions. I would hope psychologist would be trained enough to know the difference between helping people create a tiny bit of breathing room between themselves and their big feelings, and trying to shame and gaslight people out of this feelings!
Maybe we need to ask - and keep asking - “here’s a hypothetical: what would you change in your treatment plan if you 100% believed what I tell you about my lived experience?”
I can think this question up but whether I could say it to a mildly hostile healthcare worker... I’d need a lot of practice and the right amount of anger on the day. I feel tired just thinking about it.
I am loving these reflections, Michelle! And yes, CBT has been used lazily by some of my therapists, and as a general ‘just stop thinking that thought’, when my thoughts were huge and painful and needed expression and support. I love how you have good therapists now!!
I hope you have good ones now Madelleine. We all deserve good ones, you are ill enough you can’t afford anything else because of the energy sink.
In Denmark, a lot of therapists work according to the psychosomatic perception of ME, because that’s the official position, so it’s hard to find the good ones...
Shudder. You are so much better off without that.
Exactly.
I don’t unfortunately and can’t afford it right now either. Would love to have a very good therapist who gets it all...
I really dislike CBT. It’s completely useless if you have any ability to self-examine. It just feels like manipulation eventually. If you are chronically ill odds are that you are already so in tune with your body and mind to catch those trip points that put you in a flare that you self-analyse constantly. It’s eye rolling. My appointment with the new therapist is tomorrow. She is disabled herself so hopefully we gel x
Thank you for putting words to something I have hought for a long time about CBT. I have felt it almost patronising and very superficial… I’m looking forward to hearing how it goes with your new therapist, if you want to share 🌸❤️
I had my first appointment and she is lovely. We will see how we go as first couple of appointments are getting to know you but she thinks Scema would be better to explore (which I also think will work but she brought it up without prompting) so cross fingers for me :)
Oh yay, so far so good! Crossing fingers and toes!
Thanks for your interesting post. I tried CBT a few years ago and I also didn't find it very helpful. I tried a few other therapists but my experience was similar to what you describe - they have been keen to explore trauma in terms of my childhood, but have been at a loss as to trauma experienced as a result of chronic illness. I'm lucky to have found a therapist who has experience of and an interest in chronic illness and the impact it can have (eg medical gaslighting etc) - it makes a huge difference!
Thank you so much for sharing your experience! It sounds so similar to what I’m hearing from others too, this is a problem. I’m glad you seem to have found a good therapist now!! That’s special 🌸
Since getting sick I’ve always chosen psychologists or therapists who’ve got experience with or experience themselves chronic illness. As such, I’ve thankfully only had good experiences.
But reading that there is little literature doesn’t surprise me and momentarily lit a feeling of ‘I want to be the person that changes that’. I’m very impulsive and get feelings to do many projects a day (this morning was doing honey tasting experiences for tourism in my partner’s town ha). But what I’m trying to say with too many words is that lights a passion in me, to give more voice to people with chronic illness.
So glad to hear you’ve had good experiences with psychologists! Honey tasting sounds yum 🌸
Haha you’re invited to my imaginary workshop, or just to come sit in my kitchen and try honey together 🍯
Sounds lovely 🤩
💚
I had CBT at the beginning of my illness. It was basically think yourself better, and if you can’t do that then it must all be down the past trauma. One psychologist was very forthright that she made everyone cry and she was at a loss at how to make me do so. She never managed it. I also had NLP, felt manipulated.
Oh gosh, that sounds terrible! I also tried NLP, and yes, I felt it was very manipulative too.
Well, I took a considerable amount of time writing a reply. Then I messed up (somehow) and my post went off into the ether without me finishing it--only had a sentence to go. Oh well.
I just wanted to say you are deserving of an Atta girl! For getting the post written and posted!! I appreciate your effort and your kindness to use your scarce energy to make a post here. You need to put yourself as a priority so if you have readers who can’t understand that, they likely don’t fully understand what you are writing about. For the chronically ill, disabled and those who don’t have a (correct) diagnosis but can barely function on the daily, we do understand how difficult life is for even what used to be little things.
Therapists and what they bring to the table vary wildly. Keep trying until you get one that you feel comfortable with, helps you in *some* capacity and is worth your time. Time is not a renewable resource so that is the last thing you want to waste.
I enjoy your writing. But I’ll enjoy it more knowing that you are putting yourself first. As a subscriber, I’m going to be okay if you have to delay a post. Just like how I’m sure you understand if your chronically ill subscribers don’t get to read it the moment it comes through.
[she repeats to herself in a hushed tone -- slow and steady will place in the race.]
Oh no need to worry, I always put myself first. Most of my posts are written in advance so there’s never any stress in getting them out, and I take long breaks at least three times a year 😊
3 breaks a year posted at 3:33.... ☺️
Insightful and interesting read as always🙏
For me there are a few things that are key to anyone I work with (psychologist, bodyworker, yoga teacher, counsellor or any other therapist) - they need to be trauma informed and see me as the whole person that I am. The physical part of me, mental but like you mention above both the emotional and spiritual part also. In the end (by mutual parts) I stopped interacting with the healthcare service here in the uk and learnt more from the holistic psychologist on Instagram and her findings, work, teachings and Books. I’ve been fortunate to join the worlds top neurologists and headache specialists via the migraine world summit annual event combined with self study and research around rebalancing my hormones, brain restraining etc. I have worked one to one (support I’ve found essential and a major player in my road to recovery but I got pretty far on my own without initially)
Wow, I’m so happy to hear you have found top notch support! It’s so hard to find something that fits 🌸
That message sent before I had chance to finish it earlier 🙃 ....finding the support was body led, through understanding my needs (& having it confirmed that the nhs couldn’t help meet these needs - brutal at the time but now I see as a blessing in disguise) and listening to what my body was screaming at me.
A painful and misunderstood journey for sure, but one that’s taken me further than I’ve been led to believe is possible.
It’s been a Bodywork therapist/yoga teacher/breathwork/meditation guy I’ve ended up working with (I started referring to him as my healing coach).
The key thing that’s stood out about him though (that made me think he knew what he was working with from the chronic illness perspective) was that he didn’t tell me anything or pretend to have any answers. In doing so he didn’t question my beliefs and motivations to get well (or place any limitations or opinions on me).
It’s his ability to meet me where I’m at (relentlessly) and hold space for me (for all of me) that have kept me working with him for nearly 5 years.
I’m starting to realise that it’s not that we all need to rush out there and find a bodywork therapist (or a psychologist or anything else), it’s that we need to find space for all of us as a whole, be met where we at and given a chance to have all our needs (that make us whole) met and supported.
“ he didn’t tell me anything or pretend to have any answers”… love this!
I now describe him as a world class teacher because of this. A world class teacher that not many know about - yet🙃
Well said. The body mind. Holding space for the totality of the often contradictory experiences.
One thing it helps massively with is dealing with contradictory experiences, opinions.....even down to the science that so many of us rely on. Though science has been a part of my journey and study, it’s only played ‘a’ part. And I don’t reference it much in my writing (we have so many amazing writers in this arena). I don’t very often speak of it on a face to face basis either because like most of my interactions now, I get so much more from it when we’re coming from a whole body/whole person perspective.
Thank you, thank you, thank you ❤️
I called it the fear bazookas, aimed at my chronic disease. The medical gaslighting is and was devastating. Thru their well meaning ignorance I have learned another definition of patient.
First do no harm my personal motto, in addition to my families “Hold Fast”.
“… well meaning ignorance”… that’s a great phrase!