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 💖
Thank you so much for sharing all your reflections! Love a long comment! So interesting that you mention the altered relationship to self -- next week I’m sending out a blog post about how I deal with isolation by becoming my best friend. Would love to hear your thoughts on that one when it comes out. And so glad to hear you have found a good therapist who helps you with your nervous system and PTSD too. And so sorry to hear about the gaslighting, no one should have to go through that! It has changed me in ways I am still trying to comprehend. Thanks again for sharing ❤️🌸
Oh wow Madelleine I can’t wait for that post next week! Such an interesting discussion point. I would also agree that isolation equates to you becoming your own best friend! I definitely think I have become my own best friend through this. Thank you for your kind words ❤️ and making a space to share these things 🌸
So sorry to read you were gaslit in such a way😔 so glad you have found someone who understands and takes an interest in your condition who can introduce you to breathwork, ns regulation, emir and pacing in a way that meets you where you’re at🙏
Thank you Amber 🥺🫶 its so incredibly sad how common being gaslit is. So grateful for my therapist too and everything she has given me. Being met where you’re at is so important! My heart also aches so much for those who need it and can’t access it. The health system around chronic health issues is such a mess.
It’s so common, I think it’s the norm. It is a real privilege to access support in the way we have. But before I found the right person to work with I was on my own and managed to reduce the inflammation in my body, break the chronic pain cycle and start the journey of rebalancing my hormones. So whilst I still wholeheartedly believe (aligned) support is crucial, there is a lot (more than we are led to believe) that we can do/learn/understand ourselves. Not suggesting this is easy (far from), but it is possible.
Yes I agree - a lot of it really is just about access to information! Understanding what you can actually do yourself to help. Before getting sick I knew nothing about all the things I do now! Unfortunately a lot of that information is behind paywalls or hidden deep in the internet. That’s why community groups are SO helpful, word of mouth often rarely lets us down! Agree wholeheartedly- definitely not at all easy, but also not totally impossible.
That’s true, at first I found the information difficult to come across. Eventually I found it online (in the form of the Migraine World Summit) and in books that were recommended to me. Ive read so many books. The bulk of my information has come from there but also from podcasts, webinars, workshops etc.
So impressive you managed to collect so much information from those resources alongside your condition. Books are such wonderful sources of information - invaluable! Unfortunately my condition is incredibly underresearched and not well known so there are absolutely 0 books or resources for me to start with. There is an online group and that was a lifesaver for me & for everyone else. Without the group I would have been totally lost. I aim to write about my condition one day. I saw on your profile you have a memoir in the works. I admire you greatly for that as it is a goal of mine too ❤️
1. I don’t feel qualified to answer about boredom because my bed bound days were because I was in severe and agonising pain to the point I couldn’t eat, drink, speak or move so boredom didn’t factor. I can’t imagine what it’s like to be unable to get out of bed for any other reason. I’ve only experienced it once for 4 days (last year) and I now see that may have been a silent migraine (just as debilitating but without the pain). In some respects, it sounds worse or at least, presenting challenges of a different kind.
2. I was medically dismissed for 20years. Repeatedly telling doctors migraine was what it was. Told it couldn’t be, it’s too hard to diagnose, it’s not that, it’s tension headache etc etc. the consequence was that I suffered in agonising silence. I told no one. Because I thought I was doing “what you’re supposed to do”. As a result, I learned to numb out. Drink heavily, take drugs, binge eat food, have sex, watch insane amounts of crap on tv, work ridiculously hard and long hours (which all plays into the system). Until my body couldn’t take it anymore (which is then when you’re slung aside as if onto a scrap heap with all the other chronic illness warriors - how it feels to me anyway).
Only at the point of complete disability by illnes was I permitted to see a neurologist. The follow up letters detailing nothing of where I was at, just a mumbo jumbo mix up of where I had been. He hadn’t been listening and knew nothing of my case.
Luckily by this stage I’d experienced some kind of awakening and took matters in to my own hands, taking a most unauthodox path and ventured off into the unknown all alone, determined to heal myself.
3. When I put in place the much needed and desperately sought after support for myself, everyone had something to say about it. What struck me most is that noone had anything to say about the £400 a month I spent on alcohol. The Falling down drunk every weekend version of me. But everyone had something to say once I prioritised my health above everything and spent half that on support. (In the form of yoga, bodywork, breathwork, meditation, coaching etc)🤷🏼♀️
I hear you re the boredom vs pain thing. I had periods of excrutiating pain and feeling very poisoned and somehow I wasn’t bored because all my attention went to handling or actually numbing out the pain. It’s only since I have become stable that I feel this boredom and yeah it’s just something else. Arrgh damn medical system! I’m so sorry you went through that and were treated that way. And the consequences are so severe no one really understands. I am glad to hear you have found a path towards healing, even though the road there has been difficult. Thank you so much for sharing, it means a lot for me and other people to hear all these stories of medical gaslighting and that we are not alone in it 🌸
The only way I can relate to that then is that when I no longer experienced severe/agonising pain (spring onwards last year), to avoid it I had to learn to rest, which meant saying no to everyone (friends/invites etc) and closing my work diary Down. Something I had to do for ten days every month. I found it so challenging that, for a time, it actually felt easier to be in severe pain. I’ve only recently crossed a metaphorical line where this space I’ve created for myself is here to stay and I understand how essential it is to my continually (slowly) improving health.
Though, again, I have no idea how this feels if it’s not just ten days a month but most/every day. The frustration is inexplicable.
I just found a queer disabled therapist and have my first appointment on the 25th I’m REALLY hoping she gets this. My previous psych was just annoyingly inspiration porn positive about me? “You’re just amazing” “you are so high functioning it’s amazing”- lady I’m masking here and if you can’t see that you’re not the one.
Oh wow that does not sound like a good experience with your previous therapist! So sorry you had to go through that. I really hope your new therapist gets it, although it sounds like they might 🌸
These questions have got me thinking - I suspect I’ll be mulling them over for some time! The boredom of being bed bound is like nothing else, especially when my mind is an active one and I can feel it trying and reaching for something to entertain itself but brain fog makes it impossible.
I’m particularly interested in our acceptance and dismissals of alternative therapies, too. Your note about it being predominantly women failed by the medical system, and so predominantly women using alternative therapies has hit on something I’ve not yet seen expressed, and is so true. It feels almost ‘guilty’ to spend on these? Like it’s a luxury? Do you think this has anything to do with the current wellness trends, perhaps, like it’s something rich white women do and therefore superfluous?
Really appreciate your writings here, thank you for getting me thinking today!
Glad to hear it got you thinking! And yes, the alternative treatment thing is deeply complex, because you’ve got wellness culture intertwined with it which can be stigmatising, privileged and ableist, but you’ve also got traditional treatments like herbalism which we have used for centuries and which in many countries is a cheap alternative to western medical care which is not accessible or affordable to a lot of people. I do think there is also some racism involved in our scolding of alternative therapies in that it is not white western medicine. I’m still trying to gather my thoughts on this. There’s lots to uncover.
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!
Argh I hear you! It’s like no matter what we choose we are criticised for our choices. Good idea to follow your heart and what rings true for you.
💗💗💗
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 💖
Thank you so much for sharing all your reflections! Love a long comment! So interesting that you mention the altered relationship to self -- next week I’m sending out a blog post about how I deal with isolation by becoming my best friend. Would love to hear your thoughts on that one when it comes out. And so glad to hear you have found a good therapist who helps you with your nervous system and PTSD too. And so sorry to hear about the gaslighting, no one should have to go through that! It has changed me in ways I am still trying to comprehend. Thanks again for sharing ❤️🌸
Oh wow Madelleine I can’t wait for that post next week! Such an interesting discussion point. I would also agree that isolation equates to you becoming your own best friend! I definitely think I have become my own best friend through this. Thank you for your kind words ❤️ and making a space to share these things 🌸
So sorry to read you were gaslit in such a way😔 so glad you have found someone who understands and takes an interest in your condition who can introduce you to breathwork, ns regulation, emir and pacing in a way that meets you where you’re at🙏
Thank you Amber 🥺🫶 its so incredibly sad how common being gaslit is. So grateful for my therapist too and everything she has given me. Being met where you’re at is so important! My heart also aches so much for those who need it and can’t access it. The health system around chronic health issues is such a mess.
It’s so common, I think it’s the norm. It is a real privilege to access support in the way we have. But before I found the right person to work with I was on my own and managed to reduce the inflammation in my body, break the chronic pain cycle and start the journey of rebalancing my hormones. So whilst I still wholeheartedly believe (aligned) support is crucial, there is a lot (more than we are led to believe) that we can do/learn/understand ourselves. Not suggesting this is easy (far from), but it is possible.
Yes I agree - a lot of it really is just about access to information! Understanding what you can actually do yourself to help. Before getting sick I knew nothing about all the things I do now! Unfortunately a lot of that information is behind paywalls or hidden deep in the internet. That’s why community groups are SO helpful, word of mouth often rarely lets us down! Agree wholeheartedly- definitely not at all easy, but also not totally impossible.
That’s true, at first I found the information difficult to come across. Eventually I found it online (in the form of the Migraine World Summit) and in books that were recommended to me. Ive read so many books. The bulk of my information has come from there but also from podcasts, webinars, workshops etc.
So impressive you managed to collect so much information from those resources alongside your condition. Books are such wonderful sources of information - invaluable! Unfortunately my condition is incredibly underresearched and not well known so there are absolutely 0 books or resources for me to start with. There is an online group and that was a lifesaver for me & for everyone else. Without the group I would have been totally lost. I aim to write about my condition one day. I saw on your profile you have a memoir in the works. I admire you greatly for that as it is a goal of mine too ❤️
1. I don’t feel qualified to answer about boredom because my bed bound days were because I was in severe and agonising pain to the point I couldn’t eat, drink, speak or move so boredom didn’t factor. I can’t imagine what it’s like to be unable to get out of bed for any other reason. I’ve only experienced it once for 4 days (last year) and I now see that may have been a silent migraine (just as debilitating but without the pain). In some respects, it sounds worse or at least, presenting challenges of a different kind.
2. I was medically dismissed for 20years. Repeatedly telling doctors migraine was what it was. Told it couldn’t be, it’s too hard to diagnose, it’s not that, it’s tension headache etc etc. the consequence was that I suffered in agonising silence. I told no one. Because I thought I was doing “what you’re supposed to do”. As a result, I learned to numb out. Drink heavily, take drugs, binge eat food, have sex, watch insane amounts of crap on tv, work ridiculously hard and long hours (which all plays into the system). Until my body couldn’t take it anymore (which is then when you’re slung aside as if onto a scrap heap with all the other chronic illness warriors - how it feels to me anyway).
Only at the point of complete disability by illnes was I permitted to see a neurologist. The follow up letters detailing nothing of where I was at, just a mumbo jumbo mix up of where I had been. He hadn’t been listening and knew nothing of my case.
Luckily by this stage I’d experienced some kind of awakening and took matters in to my own hands, taking a most unauthodox path and ventured off into the unknown all alone, determined to heal myself.
3. When I put in place the much needed and desperately sought after support for myself, everyone had something to say about it. What struck me most is that noone had anything to say about the £400 a month I spent on alcohol. The Falling down drunk every weekend version of me. But everyone had something to say once I prioritised my health above everything and spent half that on support. (In the form of yoga, bodywork, breathwork, meditation, coaching etc)🤷🏼♀️
I hear you re the boredom vs pain thing. I had periods of excrutiating pain and feeling very poisoned and somehow I wasn’t bored because all my attention went to handling or actually numbing out the pain. It’s only since I have become stable that I feel this boredom and yeah it’s just something else. Arrgh damn medical system! I’m so sorry you went through that and were treated that way. And the consequences are so severe no one really understands. I am glad to hear you have found a path towards healing, even though the road there has been difficult. Thank you so much for sharing, it means a lot for me and other people to hear all these stories of medical gaslighting and that we are not alone in it 🌸
The only way I can relate to that then is that when I no longer experienced severe/agonising pain (spring onwards last year), to avoid it I had to learn to rest, which meant saying no to everyone (friends/invites etc) and closing my work diary Down. Something I had to do for ten days every month. I found it so challenging that, for a time, it actually felt easier to be in severe pain. I’ve only recently crossed a metaphorical line where this space I’ve created for myself is here to stay and I understand how essential it is to my continually (slowly) improving health.
Though, again, I have no idea how this feels if it’s not just ten days a month but most/every day. The frustration is inexplicable.
I just found a queer disabled therapist and have my first appointment on the 25th I’m REALLY hoping she gets this. My previous psych was just annoyingly inspiration porn positive about me? “You’re just amazing” “you are so high functioning it’s amazing”- lady I’m masking here and if you can’t see that you’re not the one.
Oh wow that does not sound like a good experience with your previous therapist! So sorry you had to go through that. I really hope your new therapist gets it, although it sounds like they might 🌸
My partner specifically sent her to me because they were disabled themselves. Crossing fingers.
Do let us know how it goes -- if you want 🌸
These questions have got me thinking - I suspect I’ll be mulling them over for some time! The boredom of being bed bound is like nothing else, especially when my mind is an active one and I can feel it trying and reaching for something to entertain itself but brain fog makes it impossible.
I’m particularly interested in our acceptance and dismissals of alternative therapies, too. Your note about it being predominantly women failed by the medical system, and so predominantly women using alternative therapies has hit on something I’ve not yet seen expressed, and is so true. It feels almost ‘guilty’ to spend on these? Like it’s a luxury? Do you think this has anything to do with the current wellness trends, perhaps, like it’s something rich white women do and therefore superfluous?
Really appreciate your writings here, thank you for getting me thinking today!
Glad to hear it got you thinking! And yes, the alternative treatment thing is deeply complex, because you’ve got wellness culture intertwined with it which can be stigmatising, privileged and ableist, but you’ve also got traditional treatments like herbalism which we have used for centuries and which in many countries is a cheap alternative to western medical care which is not accessible or affordable to a lot of people. I do think there is also some racism involved in our scolding of alternative therapies in that it is not white western medicine. I’m still trying to gather my thoughts on this. There’s lots to uncover.