The trouble is, people want a narrative, don’t they? A story with a beginning, a middle and an end. Especially an end. It’s how we make sense of things, and engage in the collective delusion that the universe is a fair and orderly place. And for that reason, even the kindest people do lose interests in the endless, dull iterations of a chronic health condition with no obvious explanation or cure. We feel people ought to be smart enough to get better. I think maybe people were better at accepting open-ended illness when there was more of it about, doctors seemed less all-powerful and most people had some kind of belief in an afterlife that would make it all worthwhile. I’m reminded of the much loved girls’ stories of the 19th Century, of the final words of that desperate chapter in “Good WIves” - “Beth was well at last.” Or the somewhat irritating chronically sick Cousin Helen in “What Katy Did” who believed she had to keep learning the lessons of the “School of Pain” until she graduated and was finally free of it. Now we are less confident of the workings of Divine providence and tend to feel the suffering individual must somehow be to blame.
This sooo resonates with me! And I ask the same kinds of question regarding how to find meaning (or how to provide it to others) when there is no narrative and a story arc. I love your last line about Divine providence and blame. It’s so true.
I’m sorry you’re feeling this way and I empathise with you completely. Living with chronic illness is definitely a full time job! On top of just existing and dealing with the symptoms, there’s the research into symptoms and diagnoses, trying anything and everything that could potentially help (and then dealing with the all-too-familiar disappointment and despair when nothing changes), attending endless doctor and hospital visits, keeping up with commitments to family and friends and employment (if able).
It is extremely frustrating that there is so little research into health conditions primarily affecting women - I’m in the process of reading ‘Unwell Women’ by Elinor Cleghorn but it’s taking me a long time to finish because I keep getting too angry! I agree with your suggestions - having your diagnoses monitoring and treated by a team of doctors in one place would be a lot easier to manage, for patients as well as health professionals. As patients, we would not have to travel to different doctors at various hospitals and we wouldn’t have to go through our whole story of symptoms and diagnoses at every appointment, which is demoralising and extremely exhausting. At the same time, doctors would already know the background information and treatment plan, so a lot of appointment time would be saved.
I’ve also lived with chronic conditions for several years, and I’m still learning how to manage chronic illness burnout. I find taking one day at a time can help. Also, getting outside and moving my body (on bad days, just simple stretches and opening the windows) can improve my mood a bit. I thought I had almost worked it out last year and was able to get out and at least go for a walk everyday, but I got an ear infection in December which set off all my conditions, and so now, I’m back to trying to claw my way out of despair and hopelessness.
Sorry for the overly long post - your article just really resonated with me! Sending compassion and gentle hugs
Thank you for this important article! It resonates on so many levels, and it also makes me angry that so many of us go through these types of burnout on top of everything else!
Gardening (on my small balcony) has been so healing. My hands in the soil, watching plants grow, feeling connected to the environment even though I spend most of my time inside. And my cats, caring for other creatures, makes me feel more present. Now that I'm thinking and writing about this, I think in general things I do with my hands have been really helpful for me, because I am still doing something despite the pain and illness. Something I gotta think more about, hah.
This is a really interesting post, and I feel much of this too as an MS lifer! I think your point at the end about being able to share all this with other chronic illness buddies is so true, it does help to lighten the load knowing you’re not alone. 💛
You are so right. I’d love to have a few days where I could have a little holiday from managing myself & my health. Its so tiring to manage our own inevitable feelings. Your magnesium situation sucks. Thank you for spending your precious energy shining a light for us all.
Nine years of ME/CFS, housebound for the last 11 months. I've been in burnout for months now, desperately trying to tread water (working part time from home, sitting in bed with a laptop). I never get to let off steam - not even have a dance to my favourite songs in my own living room. I've missed so many things and chased so many 'this will heal you!' dead ends. There's no joined up thinking with healthcare and you have to constantly chase everyone. It would be so helpful if those of us with chronic conditions were given support plans that do the legwork for us with appointments and bringing together all the various health professionals for some joined-up thinking. Or even give us our own PA who can deal with the admin of day-to-day life for us so we can just rest more.
Wishing you all the best, Madelleine, and keeping my fingers crossed something starts to work for you ❤
Thank you for shining a light on this topic. I’m gutted after all these years of IVs which sound pretty invasive that it hasn’t worked a jot.
For me you hit the nail right on the head when you say that the medical care doesn’t even centre on recovery. Only management.
When I get real with myself, I was burnt out every single month for years. Losing 2.5 weeks to 2 menstrual migraine attacks. 6 days bedbound in severe/agonising pain - unable to eat, drink, speak or move during those 2x 3 day stints at a time. I was having to recover from unimaginable and unprecedented levels of pain on top of 17 or so days worth of high levels of symptoms.
It was much worse before, it’s just this was my normal for years and, on reflection, I was burning out every single month over my period.
I focussed solely on my recovery and let go of the fix, manage, control side of things. I’m glad I did however I can’t say to anyone in this position that it’s any easier/better. Because the truth is, it isn’t. It’s hideous. And just as misunderstood as the illness. It did (for me) however, open up a little space for recovery.
Oh wow, Amber, I’m so sorry for everything you’ve been through and all the burnout in between. Burnout is so rough, it’s like it exhausts you right through to the soul.
It really is rough. And out we parade around in our everyday life (if we’re lucky to give off the impression that we’re functioning) as if wearing burn out as a badge of honour. “Look at me I’m so busy, aren’t I doing a good job?” When inside, we’re dying. And like you say, exhausted right through to the soul.
This is very interesting Madelleine, I’ve never really thought of it in that way, I just didn’t have that framework really. I’ve had a lot of relapses when medication didn’t work any more, ending up in a ‘funk’ after. But of course it very obvious that we would also get burnout. I can no longer do all the research etc, I spent a long time (years) being very proactive in my care and looking for something, anything - I can’t do that anymore, I am exhausted with it. It’s the ‘nothing works’ that really gets you done, and the constant gaslighting.
I went to the drs last week with something I thought might not be ME related, I was in a complete tizz about it. I was so used to being gaslit. I don’t go unless I really have to because I’m so tired and scared of the gaslighting. Luckily it was a nice dr and I’m getting the investigations I asked for and also a further referral again to an ME clinic as it looks like it could be Long COVID symptoms. It’s no wonder we are all burnt out.
Ooh yes, I’m there too now, not having the energy or motivation to do more research and try different things. Urgh. I wish I had better answers as to what to do about this burnout other than take it one step at a time…
I really relate to this. I’ve had a hard time forcing myself to stick to my current treatment routine (taking all the daily meds, doing the PT, etc), preventative visits have completely fallen off my radar, and all my emotional boundaries seem to have disappeared over night. I want nothing more than for my body to disappear for a week. Heck, an hour might do at this point.
Here’s my question tho: how do we tell the difference between depression and burn out? It’s hard enough in people without chronic illness, but in those of us that do, who are more likely to have depression, how do we tell when it’s simply the depression getting worse instead of burn out? The recommendations are so different, it’s important to correctly identify which one is happening.
Have they ever found an underlying cause for the magnesium deficiency? Have they checked vitamin D and K2? (D helps with Magnesium absorption and K2 helps with absorption of D.) There’s always hormone stuff as well. Here’s a link to my physical therapist’s TikTok (she specializes in women’s health and gives a bunch of info on a wide variety of stuff within that sphere) about how Vitamin D is actually a hormone: https://www.tiktok.com/t/ZTLnecCj3/
Madelleine, I’ve copied this from a recent blog I wrote on trauma and the nervous system. This is taken from the interview with Amy Apigian on the migraine world summit last month
“Under chronic stress and when our body is in a trauma state we develop a magnesium deficiency which leads to more nervous system dysregulation.
Our body needs magnesium which helps the nervous system.”
I’m just wondering, that if the body is always under chronic stress (which how can it not be with a disabling chronic health condition), how can the body absorb the magnesium (even under IV drip) when a dysregulated nervous system continues to produce a deficiency in it, ironically leading to more nervous system dysregulation?
It’s this kind of insight that the medical field do not yet have access/training in. As Amy continues to go on to say in the interview - even when they do have access to this science, they (most often) don’t know what to do with it🤷🏼♀️
For anyone who might like to read the full interview:
Oh! Thank you! I was going to look into the magnesium deficiency more, out of curiosity.
Have you heard of Vagus Nerve Stimulation? It’s being studied in relation to dysautonomia/POTS to help with nervous system regulation. From what I remember, it’s promising research.
Great to meet you in the comments here Ashley. I haven’t really looked much into nervous system stimulation specifically. I took a radical approach back in 2018 and learnt to let my body lead the way. (research has been a sizeable part of this way of being)
It took me along the path of nervous system regulation - though I didn’t realise this was the sum of all that I was implementing in my life until 2021. By which time my nervous system was regulated, at least a chunk of each month.
Nice to meet you, too. I am slowly working my way through your Substack, the Warrior Within. I have been amazed by what I’ve read so far about your progress and your courage to go against popular medical practices. As someone who’s been living with chronic migraines for over a decade, I’m well aware of how much contradictory advice there is, and am looking forward to reading more of your story.
Thank you so much for reading my material and reflecting this feedback. I appreciate your recognition of the courage it has taken. A gift I only recently realised I unleashed on the back of a breakdown I experienced in 2016. It has taken a lot of courage and speaking up which was previously something I just didn’t do. Though I’ve always been a risk taker (I like to think I take calculated risks) and so it was worth the gamble and I was comfortable with the responsibility, even if that meant it didn’t pay off or the pay offs weren’t quite as magnificent as they have been.
I am sorry to read you have suffered with chronic migraine for over a decade. Please reach out if you have any questions or if there is anything you’d like to know about my journey that I haven’t written about. Or if I can be of assistance to you in any way at all.
I am currently in burnout. A mixture of endometriosis, autism and perimenopause has me feeling like giving up on everything. My mood swings are erratic. Brain fog makes it so hard to have a semi normal conversation.
I am so sorry that you're going through this. I wish I had an answer or suggestion regarding the magnesium issue. 🌻
Totally get this. When I am in a burnout, often after trying a new med or supplement that causes worse (side) effects or now that I’m 20 months in titration from gabapentin, I usually eat foods that I’m not suppose to for migraine y inflammation reasons, it can be a defeatist attitude. As in I try so hard,it’s not helping so fuck it. I also burrow from the world y everyone, under sheets, pillow over my head. I also find that sharing how I’m feeling with my chronic ill/disabled friends really helps. I have a friend who I do scream therapy with. We also force ourselves to laugh for 1-2 minutes. If I don’t feel like sharing etc I write & that really helps too. It’s amazing that I have to keep remembering this again & again 😂😂😂.
Bearing witness to your chronic burnout and sitting alongside you Madelleine. Gentle hugs.
From outside, I've watched loved ones battle- on, exhausted on their insides and trying desperately to soldier on, despite the inability of their bodies to hold 'metabolic energy', or their bodies are depleting it, battling cancer/other disease, faster than it can be replenished...so I see you and feel for you and all those who've written comments.
Thank you for spending your precious time and energy to support others, and share this work.
Always welcome, Madelleine. Also feel I need to say, you're doing amazingly...I'd donate some energy, well at least some since I give lots to Mum and keep myself going...but if I could give you a little boost to help I would..
The trouble is, people want a narrative, don’t they? A story with a beginning, a middle and an end. Especially an end. It’s how we make sense of things, and engage in the collective delusion that the universe is a fair and orderly place. And for that reason, even the kindest people do lose interests in the endless, dull iterations of a chronic health condition with no obvious explanation or cure. We feel people ought to be smart enough to get better. I think maybe people were better at accepting open-ended illness when there was more of it about, doctors seemed less all-powerful and most people had some kind of belief in an afterlife that would make it all worthwhile. I’m reminded of the much loved girls’ stories of the 19th Century, of the final words of that desperate chapter in “Good WIves” - “Beth was well at last.” Or the somewhat irritating chronically sick Cousin Helen in “What Katy Did” who believed she had to keep learning the lessons of the “School of Pain” until she graduated and was finally free of it. Now we are less confident of the workings of Divine providence and tend to feel the suffering individual must somehow be to blame.
This sooo resonates with me! And I ask the same kinds of question regarding how to find meaning (or how to provide it to others) when there is no narrative and a story arc. I love your last line about Divine providence and blame. It’s so true.
I’m sorry you’re feeling this way and I empathise with you completely. Living with chronic illness is definitely a full time job! On top of just existing and dealing with the symptoms, there’s the research into symptoms and diagnoses, trying anything and everything that could potentially help (and then dealing with the all-too-familiar disappointment and despair when nothing changes), attending endless doctor and hospital visits, keeping up with commitments to family and friends and employment (if able).
It is extremely frustrating that there is so little research into health conditions primarily affecting women - I’m in the process of reading ‘Unwell Women’ by Elinor Cleghorn but it’s taking me a long time to finish because I keep getting too angry! I agree with your suggestions - having your diagnoses monitoring and treated by a team of doctors in one place would be a lot easier to manage, for patients as well as health professionals. As patients, we would not have to travel to different doctors at various hospitals and we wouldn’t have to go through our whole story of symptoms and diagnoses at every appointment, which is demoralising and extremely exhausting. At the same time, doctors would already know the background information and treatment plan, so a lot of appointment time would be saved.
I’ve also lived with chronic conditions for several years, and I’m still learning how to manage chronic illness burnout. I find taking one day at a time can help. Also, getting outside and moving my body (on bad days, just simple stretches and opening the windows) can improve my mood a bit. I thought I had almost worked it out last year and was able to get out and at least go for a walk everyday, but I got an ear infection in December which set off all my conditions, and so now, I’m back to trying to claw my way out of despair and hopelessness.
Sorry for the overly long post - your article just really resonated with me! Sending compassion and gentle hugs
Thank you so much for empathising! And I looove all your reflections and suggestions here, it all resonates deeply 🌸
Thank you for this important article! It resonates on so many levels, and it also makes me angry that so many of us go through these types of burnout on top of everything else!
Gardening (on my small balcony) has been so healing. My hands in the soil, watching plants grow, feeling connected to the environment even though I spend most of my time inside. And my cats, caring for other creatures, makes me feel more present. Now that I'm thinking and writing about this, I think in general things I do with my hands have been really helpful for me, because I am still doing something despite the pain and illness. Something I gotta think more about, hah.
I’m both glad and sad it resonated 🌸 Ooh gardening and working with your hands, and pets— I can really imagine how soothing that must be!
This is a really interesting post, and I feel much of this too as an MS lifer! I think your point at the end about being able to share all this with other chronic illness buddies is so true, it does help to lighten the load knowing you’re not alone. 💛
So glad it resonated (and also sad that it did) 🌸❤️
You are so right. I’d love to have a few days where I could have a little holiday from managing myself & my health. Its so tiring to manage our own inevitable feelings. Your magnesium situation sucks. Thank you for spending your precious energy shining a light for us all.
Yes, please a ‘body holiday’ 💙💙 Thank you, Michelle ❤️
Nine years of ME/CFS, housebound for the last 11 months. I've been in burnout for months now, desperately trying to tread water (working part time from home, sitting in bed with a laptop). I never get to let off steam - not even have a dance to my favourite songs in my own living room. I've missed so many things and chased so many 'this will heal you!' dead ends. There's no joined up thinking with healthcare and you have to constantly chase everyone. It would be so helpful if those of us with chronic conditions were given support plans that do the legwork for us with appointments and bringing together all the various health professionals for some joined-up thinking. Or even give us our own PA who can deal with the admin of day-to-day life for us so we can just rest more.
Wishing you all the best, Madelleine, and keeping my fingers crossed something starts to work for you ❤
Sending so much love and support your way ❤️🌸 These are great suggestions!
Thank you for shining a light on this topic. I’m gutted after all these years of IVs which sound pretty invasive that it hasn’t worked a jot.
For me you hit the nail right on the head when you say that the medical care doesn’t even centre on recovery. Only management.
When I get real with myself, I was burnt out every single month for years. Losing 2.5 weeks to 2 menstrual migraine attacks. 6 days bedbound in severe/agonising pain - unable to eat, drink, speak or move during those 2x 3 day stints at a time. I was having to recover from unimaginable and unprecedented levels of pain on top of 17 or so days worth of high levels of symptoms.
It was much worse before, it’s just this was my normal for years and, on reflection, I was burning out every single month over my period.
I focussed solely on my recovery and let go of the fix, manage, control side of things. I’m glad I did however I can’t say to anyone in this position that it’s any easier/better. Because the truth is, it isn’t. It’s hideous. And just as misunderstood as the illness. It did (for me) however, open up a little space for recovery.
Oh wow, Amber, I’m so sorry for everything you’ve been through and all the burnout in between. Burnout is so rough, it’s like it exhausts you right through to the soul.
It really is rough. And out we parade around in our everyday life (if we’re lucky to give off the impression that we’re functioning) as if wearing burn out as a badge of honour. “Look at me I’m so busy, aren’t I doing a good job?” When inside, we’re dying. And like you say, exhausted right through to the soul.
Soo true!
This is very interesting Madelleine, I’ve never really thought of it in that way, I just didn’t have that framework really. I’ve had a lot of relapses when medication didn’t work any more, ending up in a ‘funk’ after. But of course it very obvious that we would also get burnout. I can no longer do all the research etc, I spent a long time (years) being very proactive in my care and looking for something, anything - I can’t do that anymore, I am exhausted with it. It’s the ‘nothing works’ that really gets you done, and the constant gaslighting.
I went to the drs last week with something I thought might not be ME related, I was in a complete tizz about it. I was so used to being gaslit. I don’t go unless I really have to because I’m so tired and scared of the gaslighting. Luckily it was a nice dr and I’m getting the investigations I asked for and also a further referral again to an ME clinic as it looks like it could be Long COVID symptoms. It’s no wonder we are all burnt out.
Ooh yes, I’m there too now, not having the energy or motivation to do more research and try different things. Urgh. I wish I had better answers as to what to do about this burnout other than take it one step at a time…
I really relate to this. I’ve had a hard time forcing myself to stick to my current treatment routine (taking all the daily meds, doing the PT, etc), preventative visits have completely fallen off my radar, and all my emotional boundaries seem to have disappeared over night. I want nothing more than for my body to disappear for a week. Heck, an hour might do at this point.
Here’s my question tho: how do we tell the difference between depression and burn out? It’s hard enough in people without chronic illness, but in those of us that do, who are more likely to have depression, how do we tell when it’s simply the depression getting worse instead of burn out? The recommendations are so different, it’s important to correctly identify which one is happening.
Have they ever found an underlying cause for the magnesium deficiency? Have they checked vitamin D and K2? (D helps with Magnesium absorption and K2 helps with absorption of D.) There’s always hormone stuff as well. Here’s a link to my physical therapist’s TikTok (she specializes in women’s health and gives a bunch of info on a wide variety of stuff within that sphere) about how Vitamin D is actually a hormone: https://www.tiktok.com/t/ZTLnecCj3/
That’s a great question, one I don’t have the answer for. I would love for my body to disappear for a bit too! And yes, everything’s been checked.
Madelleine, I’ve copied this from a recent blog I wrote on trauma and the nervous system. This is taken from the interview with Amy Apigian on the migraine world summit last month
“Under chronic stress and when our body is in a trauma state we develop a magnesium deficiency which leads to more nervous system dysregulation.
Our body needs magnesium which helps the nervous system.”
I’m just wondering, that if the body is always under chronic stress (which how can it not be with a disabling chronic health condition), how can the body absorb the magnesium (even under IV drip) when a dysregulated nervous system continues to produce a deficiency in it, ironically leading to more nervous system dysregulation?
It’s this kind of insight that the medical field do not yet have access/training in. As Amy continues to go on to say in the interview - even when they do have access to this science, they (most often) don’t know what to do with it🤷🏼♀️
For anyone who might like to read the full interview:
https://warriorwithin.substack.com/p/the-nervous-system-trauma-and-migraine
I’ve often felt this magnesium thing was a catch-22, it’s annoying. And thank you for the interview!
Oh! Thank you! I was going to look into the magnesium deficiency more, out of curiosity.
Have you heard of Vagus Nerve Stimulation? It’s being studied in relation to dysautonomia/POTS to help with nervous system regulation. From what I remember, it’s promising research.
Great to meet you in the comments here Ashley. I haven’t really looked much into nervous system stimulation specifically. I took a radical approach back in 2018 and learnt to let my body lead the way. (research has been a sizeable part of this way of being)
It took me along the path of nervous system regulation - though I didn’t realise this was the sum of all that I was implementing in my life until 2021. By which time my nervous system was regulated, at least a chunk of each month.
Nice to meet you, too. I am slowly working my way through your Substack, the Warrior Within. I have been amazed by what I’ve read so far about your progress and your courage to go against popular medical practices. As someone who’s been living with chronic migraines for over a decade, I’m well aware of how much contradictory advice there is, and am looking forward to reading more of your story.
Thank you so much for reading my material and reflecting this feedback. I appreciate your recognition of the courage it has taken. A gift I only recently realised I unleashed on the back of a breakdown I experienced in 2016. It has taken a lot of courage and speaking up which was previously something I just didn’t do. Though I’ve always been a risk taker (I like to think I take calculated risks) and so it was worth the gamble and I was comfortable with the responsibility, even if that meant it didn’t pay off or the pay offs weren’t quite as magnificent as they have been.
I am sorry to read you have suffered with chronic migraine for over a decade. Please reach out if you have any questions or if there is anything you’d like to know about my journey that I haven’t written about. Or if I can be of assistance to you in any way at all.
I am currently in burnout. A mixture of endometriosis, autism and perimenopause has me feeling like giving up on everything. My mood swings are erratic. Brain fog makes it so hard to have a semi normal conversation.
I am so sorry that you're going through this. I wish I had an answer or suggestion regarding the magnesium issue. 🌻
So sorry to hear about your burnout, it’s relentless. Lots of care and support your way 🌸❤️
Bless your heart. Thank you. 🌻 Right back at you.
Totally get this. When I am in a burnout, often after trying a new med or supplement that causes worse (side) effects or now that I’m 20 months in titration from gabapentin, I usually eat foods that I’m not suppose to for migraine y inflammation reasons, it can be a defeatist attitude. As in I try so hard,it’s not helping so fuck it. I also burrow from the world y everyone, under sheets, pillow over my head. I also find that sharing how I’m feeling with my chronic ill/disabled friends really helps. I have a friend who I do scream therapy with. We also force ourselves to laugh for 1-2 minutes. If I don’t feel like sharing etc I write & that really helps too. It’s amazing that I have to keep remembering this again & again 😂😂😂.
Wow, scream and laugh therapy! Sounds effective! I totally get the defeatist attitude, that’s how I react too sometimes ❤️
Bearing witness to your chronic burnout and sitting alongside you Madelleine. Gentle hugs.
From outside, I've watched loved ones battle- on, exhausted on their insides and trying desperately to soldier on, despite the inability of their bodies to hold 'metabolic energy', or their bodies are depleting it, battling cancer/other disease, faster than it can be replenished...so I see you and feel for you and all those who've written comments.
Thank you for spending your precious time and energy to support others, and share this work.
Aawe thank you so much, Victoria, for your soothing words 🌺❤️
Always welcome, Madelleine. Also feel I need to say, you're doing amazingly...I'd donate some energy, well at least some since I give lots to Mum and keep myself going...but if I could give you a little boost to help I would..
Thank you so much!