When you're chronically ill - your world turns upside down.Managing your illnesses, staying on top of symptoms and navigating healthcare is exhausting. Learning to Let Go can make things easier.
Thank you for all your writings, this series, and this article, for which you had to dig so deep to share so much. You are very generous with your hard-won insights, and I am certain that you are helping more fellow travelers than you can ever know. On behalf of us all, many thanks. 🙏
Thank you so much for saying this! I’m always tremendously unsure of myself whenever I post a new article - I really appreciate hearing that it’s helping people.
This one took a long time to write since it’s a tough thing to DO - let alone explain!
Thank you. I've been dealing with health issues for over twenty years and I'm still unable to give myself a break. I always feel like I should be able to do more.
You’re so welcome. It’s SO hard. It doesn’t help that we are taught by society to ‘play through the pain.’ We’re indoctrinated to view sickness as weakness - a moral failing. So of course it’s hard for us to give ourselves a break.
But we deserve it - and we should be kinder to ourselves. Easier said than done I know but I hope my articles helps people find a way to let go and move towards acceptance.
It is indeed. All too common though! Most of us go through quite a few doctors telling us ‘nothing is wrong just play through the pain’… and the more we push the more damage gets done.
I had a physical therapist tell me that it was normal to be sore after work. Ma’am I sit at a desk all day processing mortgages. No I shouldn’t be in this much pain from sitting all day.
I snapped at her and I told her I used to wait tables on the second floor of a restaurant when the kitchen was downstairs so I certainly know what sore after work feels like, and that’s not it.
Yeah, she had actually herniated one of my discs further with traction.
This wasn’t pain from processing mortgages.
Oh and the worst part was this woman put in my notes that I was improving with physical therapy because she wanted to make sure my insurance company would approve as many visits as I wanted. I told her I had 20 visits and she didn’t believe me. This caused a huge problem when I had to file for disability.
Except I guess now it’s on record at the SSA that this specific physical therapist can’t be trusted because I told the ALJ EXACTLY why she wrote that & he compared it to my other medical records from that same time period and nobody else said I was getting better.
I know that’s not relevant to the topic of this newsletter, but I wanted to put it here for anyone who might be going through any kind of litigation regarding their health. It’s really important to look at your medical records like you would your credit report to check for errors Especially because the errors get out there through Referrals and what not it’s almost impossible to correct them.
The things they will tell us are 'normal' never ceases to amaze me. Things that are objectively anything but 'normal'. It does so much harm because many patients will believe them given they are the 'experts' - and it just leads to more unnecessary pushing and damage to our bodies.
I stopped trying to deal with sleep medicine because the advice they give healthy people for insomnia doesn’t really work for MECFS.
If I wake up in the middle of the night I probably shouldn’t just get up and do stuff until I feel tired enough to go back to bed. I’m always tired enough to go to bed it doesn’t mean I sleep lol
I only have a few hours a day I don’t want them to be between 3 and 6 AM.
Then they try to tell me not to nap as if I have any control over that lol my battery just dies. I have no say in this.
Yeah I have a story, friends sister-in-law was pregnant and had terrible back pain. So she said something to her orthopedic surgeon husband who told her that that’s just pregnancy and she should suck it up.
The back pain kept getting worse, still told to suck it up. So she did.
Then the baby was born and the back pain didn’t go away, it turned out she had spine cancer I guess the pregnancy hormones lit it up, she had no symptoms before pregnancy.
She died before her baby was four month old, and within six months he married a nurse from work so he’s fine. That poor little girl won’t ever remember her mother. And the poor woman, all that suffering because “pregnancy causes pain, suck it up.”
That's absolutely terrible. We need to banish 'suck it up' from the medical vernacular. Don't tell a patient it's nothing or that they should ignore it - run the tests and MAKE SURE you're not missing something.
I suppose HE won’t say that to his ortho patients anymore, but the pro forced birth stuff that probably comes out of his mouth now after she grew a whole baby while dying. Ugh
Also this is why I love my PCP. I had some really weird big toe joint pain twice last year, randomly. He had me do some x-rays and he checked my blood for gout signs. Nothing. Then I found out “big toe joint pain” Is such a telltale symptom of perimenopause that it’s kind of a joke on Reddit in those subs.
When I saw him yesterday I told him I’m pretty sure that’s what it is and that I appreciate him for not just telling me “it’s hormones” because I would’ve been really mad about that. He laughed and he said well I at least like to rule out other things before I just blame hormones, and he actually never did I had to stumble upon that myself. I appreciate him and I told him. If anyone gives him Covid and takes him from me I might go for vigilante (JK, probably)
Acceptance seems to come and go for me. It’s like the never ending spiral of grief that hits over and over again. I started the cycle again recently and d think I’m now back in the bargaining phase again. Trying to trick my body into feeling better. Luckily I’ve been there many times before and can take it all lightheartenedly. I think the one thing I’ve really accepted is that by the time any treatments are found and allowed on the NHS here, I will very possibly be in my grave. Progress has been almost non existent in my 15+ years.
It comes and goes for me too - I try and remember to take it all in stride - but some days are easier than others. Last night and most of today have been horrible symptom wise. I’m definitely in a crash and yet I was beating myself up for not responding to comments quicker.
The irony eh? Can’t even take my own advice! I’ve been diagnosed for close to a decade now and very little progress has been made in that time. I thought Long Covid would bring faster progress since it’s disabling people in such record numbers - yet most of society seems intent on ignoring it and looking the other way.
I agree that acceptance is a hard road, and also with your acknowledgment that even once you’ve been able to somehow get there, it isn’t just done and dusted - I had a fit of rage about my MS just last week that seemed to come from nowhere! I guess acceptance is also about accepting all the feelings that come along, good or bad.
Thank you for sharing this part of your story. I relate to these sorts of posts being hard to write, so I hope you’re taking extra care of yourself. 💗
Thank you Jane - and I’m sorry to hear of your fit of rage last week. But I get it! I had one tonight after posting 🤦♀️
I was so proud to have the article published - but then I tried to write a summary to share on social media and my brain completely gave up on me. I felt irrationally angry because it wasn’t “fair”. I didn’t want to deal with severe brain fog - I wanted to enjoy getting an article completed.
Unfortunately chronic illness so rarely cares about what we want - hence the importance of learning to let go!
Excellent points, I can’t even tell you how many times I’ve started gaslighting myself since I thought I gained acceptance. At least now I can catch it pretty quickly, whereas before I would have to crash myself before I would stop telling myself I am not that sick.
Thanks for sharing. Would love to see a post about the recipes you keep mentioning. Healthier eating seems expensive and time consuming to me most of the time.
Thanks for commenting! A lot of people think healthy eating will be too hard or prohibitively expensive - but it can be done quite economically and there’s a ton of time saving tips and tricks too.
I will be sure to include some of the ways I make it quick and easy when I post my recipes.
Oh yes, I would love to see the recipes too. Maybe I’m having a PTSD reaction but I’m really worried about our food supply since it seems every time I open my email there’s some kind of a listeria outbreak or something. I stopped using Animal products, I’m currently using oat milk in my coffee but I would prefer to make my own. At least I know the water has been filtered and the oats at least claim to be organic.
I get worried about that too - it seems to be getting worse. The good news is it's really not that hard to make your own and infinitely tastier than store bought! Will work on some recipes :)
I'm sorry your inner monolog was so cruel. Bad enough when we get that from other people, but it's harder to cope when it's from your own head.
I'm grateful my head never did that to me. Doctors kept asking me questions about why I thought I was sick and whether I blamed myself. It seemed so odd. No? I didn't choose this. No one did it to me. Some people are tall, some people are stocky, some people have brown hair, some people have killer immune systems that try to destroy their own bodies from the inside out. These things happen.
I learned through meditation (self-taught zen) to accept what is. If it's no one's fault, there's no one to blame. If you can't change it, there's no point wasting limited strength fussing about it. Anger comes from the subconscious. You can't control that. But you can take a breath, look at the situation, and decide whether it's worth feeding that anger your energy or whether it's better just to step out of the way and let it flow past you.
I spent a long time in my adolescence trapped in bed, too exhausted to sit up, pain moving with a will of its own across my body. Where would the next spike be? How long would it last? Would it be a sharp spike, a deep broad ache, pins and needles, all of the above? No way to know. Nothing to do about it. Nowhere to go. Nothing to distract myself. (This being in the days of large computers and dial-up internet that charged by the minute. I had books by the stack, but it's hard to read when you're body is on fire and your eyes don't want to focus due to extreme fatigue.) All I could do was lie still and think. I had to accept the pain. It wasn't pleasant, I didn't want it, but I couldn't change it. Accepting it as a fact of life was the only option. Meditation helped a lot.
But it was much harder a decade later when my mind went, too. My body was working better (in part due to the development of pain meds that actually work on me), but I lost most of my higher processing power and had to completely relearn how to think and talk. How to cope with executive dysfunction. I spent years going to every doctor, going through every test. I even had antimatter in my brain. (The P in PET scan stands for Positron. A short-lived artifical isotope radiates subatomic antimatter, and the bursts of radiation produced when those particles collide with regular electrons can be easily pinpointed by the scanner.) To no avail. I finally learned it was a known symptom of my existing neurological disorder. The chronic pain I'd been living with for so long was caused by my nerves being hypersensitive to everything, and my brain basically just wore out from being constantly flooded with excess signal.
I'd coped with my body failing me by focusing on making the most of my mind, and now that was going away, too. Learning to accept that as something else that wasn't going to change was the hardest thing I've ever done. It meant giving up on the goals I'd spent a lifetime working towards. Studying hard in school, learning as much as I could, getting into MIT, laying plans on a career as an engineer designing better medical equipment... All gone. No longer physically possible.
Honestly, I don't know if there's a next step. Another direction. Something I've missed. I hate feeling useless. But I know I'm better off accepting reality. Which doesn't mean I stopped going to doctors and looking for new rocks to turn over and new barrel bottoms to scrape. But it does mean learning to live within my current limits. Not to hurt myself trying to do things my body can't handle. Not to punch myself in the head getting worked up over things I can't change. Not to keep banging against walls I can't move.
But the flip side of accepting the pain is equally important. Make the most of your joys. See a cool butterfly land on a pretty flower? Live wholly in that moment, letting everything else go, and just enjoy the heck out of it. Yes, there's a sunset every day, but each one is a unique experience. Take a moment to bask in it. Have a stupid joke? Great! Laugh at it with your whole heart. Embrace your joy. Savor it. You need it and you deserve it.
Thank you so much for sharing - and let me say that you are FAR from useless. Never forget that.
I understand how much harder it is when your mind goes as I have that issue too. My hypotension causes severe brain fog and lack of oxygen to the brain - and when that happens I can’t do the ONE thing that has gotten me through all my suffering and difficult times of the past - write.
It’s devastating. Being unable to communicate and form coherent thoughts is one of the most unsettling feelings I’ve experienced.
But your contributions here are SO welcome and valuable for the chronic illness community! I think we all need to remember that no matter how sick we are or how much we’re struggling - when we show up for other people and try and help them - we are doing an incredible amount of good. We are bringing joy to someone else - and perhaps to ourselves as well.
It really sucks when you feel your mental capacity go. When you try to get your brain to just do what it's always been good at doing, and the bottom just falls out. The thought trains derail. I'm sorry you've had to deal with that, too.
But your writing is always clear and valuable. It saddens me to see you second guessing yourself. I understand. But I think you deserve a lot more credit than you seem to give yourself sometimes.
My thought train is derailing big time right now - I can’t even write a post to share this post anywhere else (oh the irony)
Thank you for saying I should give myself more credit - a lot of my friends say the same thing. I’m working on it - but just like “letting go”… propping myself up has never come easily to me !
You've already written an introductory note for this post. That's a good start.
You don't have to post about it right now, anyway, if your brain is locked up.
But if it helps:
Coming to terms with the new reality of having chronic illness is hard. Here's how I learned to come to terms with it, while still working to make the most of my life. It's the third post in my MCAS series, but it applies more broadly, too.
How does that strike you as a short and sweet intro? Can you rephrase from there? Does having that start help get through the fog a bit?
I had something semi drafted a few days ago (thank goodness) that I was able to clean up through the fog …. But I will save this and perhaps use it down the road! I tend to share things multiple times since a lot of people miss it on the first pass.
I can relate to this so hard. I used to handle peoples mortgage or divorce flawlessly. Now I forget all kinds of things. Brain fog has me reading directions wrong then very confidently doing things wrong. And it’s so painful when I discover it because I used to be smart.
Just yesterday I was laughing with one of my girlfriends because I was telling her how frustrated my medical providers must be when I go back-and-forth between being offended when they explain something like I’m five because “I’m not stupid!!” and “Don’t you know I have brain fog, explain it like I am 5!”
We discussed it and I decided it’s better to let them think I am dumb than to let them think I am competent and on top of things.
I'm sure you are competent. But you still have struggles. And those can be up and down. Sometimes you do need it explained like you're five. But that doesn't mean they should be condescending about it. It can be hard to find the right line. Especially with doctors, who are less likely to treat you as a credible partner in care if they don't think you're on top of things. Having my dad (a now-retired physician) along with me on medical appointments made such a visible difference in how doctors treated me and my self-reported symptoms.
It's so frustrating that we still need to bring a male and/or a healthcare worker with us to be taken seriously. I'm percolating on another article about this and specifically the case of Gisele Pelicot - where doctors deferred to her husband instead of protecting and listening to her.
I'm watching a PBS Newshour segment on a child who was abused and had to prove herself after the cops got her convicted of lying about it. IDK if it's too traumatic, but it feels like another aspect of this same issue. Men in power just not believing women, gaslighting them, blaming the victim, protecting the abuser, and just utterly failing at what they're nominally supposed to do. https://www.pbs.org/newshour/show/florida-teen-forced-to-collect-her-own-evidence-to-prove-she-was-sexually-abused
Oh yes I remember those those weird questionnaires I was getting them a lot back in 2018 and I believe the medical facilities I was going to were getting extra money for doing “depression screenings”.
I started refusing to complete them because they don’t take into account chronic illness. If I don’t have the energy to do fun things and I don’t have any money to do fun things, I’m not doing fun things like I used to and it has nothing to do with depression.
Anyway, You can refuse to complete those questionnaires and I recommend it. If you get labeled with depression and you need any kind of pain management you may not get it. Don’t do it
Also if you are a victim of childhood neglect or abuse or have any kind of childhood trauma and you need pain management don’t tell them anything bad about childhood. Don’t let that stuff get in your medical records if you think you need pain medication in your life.
And then there is the other layer to this - other people's expectations. I had to give up working at the beginning of 2018 and had my second heart transplant in October of that year. At my one year checkup, they found the disease that destroyed my first transplanted heart and put me on some meds to stop the progression. Those drugs kick my ass. I know I have my best energy in the morning, so I push myself to get as much done as possible by lunch - writing, errands, administrative work. At lunch, I take my meds and eat, then an hour later I'm on the the couch sick as hell. That lasts until 3 or 4 then I get up and do some light housework and make dinner. After dinner, I'm back to normal until bedtime. I begged the doctors to let me try going off those nasty drugs, so I got a three month reprieve during the summer of 23. My next checkup showed that the damage from the disease had doubled, so I went back on them on an even higher dose. Every day at lunch and bedtime, I take those damn pills. At least I sleep through the second dose side effects.
Just this week, I mentioned to my husband that he seems distant and asked if he wanted to do something like a spontaneous weekend away. His response gutted me. Basically, he sees me as someone who is always "lying on my ass" and not any fun. This despite the fact that I do 100% of the cooking, cleaning, laundry, grocery shopping, and care for our dogs. Now that he's retired, he wants me to be there to entertain him. For 20 years, he would get cross with me when I wanted his attention because he was too busy or too tired because he was always working. So I found other things to occupy myself, like my writing career. Suddenly, he's the one who feels neglected.
I haven't found the answer yet. I can't stop my meds or I will die. But if I don't, I may lose my marriage. Chronic illness is hard.
I'm so very sorry Dawn and I'm sending you the biggest gentlest hugs. That's terribly hard. It's one thing to manage our own expectations and a whole different beast to manage the expectations of others.
I'm sorry that your husband feels that way - especially when I know how hard you're trying to do as much as your body will allow.
For what it's worth - I'm proud of you for taking the pills even though they make you feel horrible. You're protecting your heart and doing what you NEED to do - and I hope in time your husband can see and understand that.
Can I do anything to help? I'm certainly not someone who's qualified to give marriage advice - but I will happily be a virtual cheerleader for you and encourage you when I can. We all need it from time to time!
I just need to be very judicious of my time. Today we went to an orchard and on a nature hike. We had a lot of fun! Then I took my meds and slept all afternoon because the combination of drugs and activity knocked me out. When we got up, I went with him to pick out new glasses at the eyeglass store. Dinner was reheated leftovers because I had zero gas in the tank for cooking a meal. He's happy again. Now I'm catching up on my emails and messages from the day.
It IS the hardest thing! I was/am a type A: got a task list for the day and that thing is getting done! But no more. Today I just want to sit and cry because I thought I was going to have a good one. So, I try to do something TOTALLY FUN and just for me. I've worked hard and I deserve the rest my body craves. After all, I'm 69 yo and not done yet!!! Thanks for the reminders; we all need help sometimes
You’re so welcome! I’ve been the same today - I actually slept fairly well and thought it would be a good day - only to end up in a terrible flare unable to get anything done. I’m super late responding to messages as a result and really frustrated with myself.
I need to learn to take my own advice! But it’s also important to remember that even though we can KNOW that we need to let things go and be kinder to ourselves - sometimes it’s a very hard thing to do. That’s ok too - no one gets it right 100% of the time!
I just wanted to note that if you are in the US and you are on disability, unfortunately we have to keep seeing doctors even if there’s nothing they can do. Maybe not everyone, But I get reviewed every two years and if I’m not under the continuous care of a doctor they can stop my SSDI
I actually lost a year and a half of backpay because I didn’t have health insurance so I was only seeing my PCP because he would bill me later. I didn’t fight it because I really needed income, but it wasn’t right.
I should not have had to lose a year and a half of monthly payments simply because I couldn’t afford to see a doctor when I had zero income.
I became disabled in 2012 but I didn’t actually get an MECFS diagnosis until 2019. I didn’t realize I was chronically ill until a nurse at my PCP’s office the year before got mad at me for calling about my symptoms and she yelled at me and told me “you have a chronic illness!” Weird they wouldn’t diagnose me but they would yell at me for not realizing I had one.
Anyway, I actually felt like I got into remission in 2020 because I started LDN and I was allowed to rest. We finally got telemedicine so I didn’t have to drive all over the state to talk to specialist who weren’t going to be able to help me anyway, we could just have a phone call.
It was truly amazing how much better I felt, and I know a lot of it was the LDN, but simply not having to run around looking for answers getting stressed out about the gaslighting really helped.
I think I’m almost at the point of giving up on them again. Thanks to women on social media I realized some of my weird foot symptoms are simply from perimenopause. That’s also why my ADHD symptoms are not responding to meds like they used to. On one hand I appreciate my PCP not blowing me off by telling me it’s just my hormones, but after he ran tests he could have suggested perimenopause. Nope, he left it to me to figure out for myself like usual.
So yeah, I’m done dealing with medical providers until warm weather rolls around again and I want to go outside. Then maybe I’ll start complaining again about being sick to go outside every day.
Anyway, this whole rant was simply meant to say that Covid actually helped me gain acceptance, and I was really excited thinking that the rest of the world would gain better understanding about MECFS because of long Covid, but unfortunately I still have to explain to every medical provider I see that it’s a neuroimmune disease and no I won’t take this mask off.
I'm so sorry it's been such a struggle Maggie - I hate that we can't even access safe healthcare. I too felt considerable hope when Covid began because I assumed Long Covid would be a problem 'too big to ignore'. Clearly I underestimated the depths of people's denial!
I'm working on a series of articles about masks in healthcare that I hope will move the needle and help bring mandatory masking back to medical facilities (or at least convince individual healthcare workers of the value of masking for their patients).
Thank you for taking the time and expending the energy required to share this with everyone. From what little I have read so far, it seems as though your journey with chronic illness has been much more severe than mine, but much of what you have said resonates with me, especially when you say "When we start prioritizing letting go - when we move towards acceptance and release the need to control everything - we can begin to find peace."
I have lived with fibromyalgia, alopecia and various other unexplained symptoms for about 8 years. After many years of fighting the symptoms and trying to overcome them, I surrendered. That was when I started to learn from the experience and find the hidden gifts within the symptoms.
Surrender and acceptance may not bring a physical cure, but they can bring profound healing and inner peace to both body and mind.
I look forward to reading more of your insights in due course.
Hi Rob - thank you so much for this kind comment! I completely agree with what you said about surrender and acceptance - the healing and peace they can provide can not be understated.
Thank you for this. My inner monologue is brutal, and I wonder sometimes if the increased stress from it is encouraging inflammatory processes, making my nerves more mad/less able to heal. It’s so hard though.
I definitely think stress promotes inflammation - but it’s not an easy thing to let it go or to adopt a mindfulness practice. I think the best thing we can do is just to try - every time you succeed it does reduce stress!
This is so good! Also, hello from another Type A-er. I've had such a hard time accepting my disability (even though I've had it my whole life) and have definitely been going through the "why am I bothering because stuff keeps happening with my body anyway" so thanks very much for this piece. Very helpful 🫶
You’re so welcome! I go through the “why am I bothering” on a regular basis. You’re not alone. I think it’s a natural response when things just seem to keep going wrong.
I always remind myself that we can’t know what it would be like if we weren’t trying so hard. If we stopped taking care of ourselves - tbings would probably be much worse. That helps me sometimes 💜
Thank you for all your writings, this series, and this article, for which you had to dig so deep to share so much. You are very generous with your hard-won insights, and I am certain that you are helping more fellow travelers than you can ever know. On behalf of us all, many thanks. 🙏
Thank you so much for saying this! I’m always tremendously unsure of myself whenever I post a new article - I really appreciate hearing that it’s helping people.
This one took a long time to write since it’s a tough thing to DO - let alone explain!
Thank you. I've been dealing with health issues for over twenty years and I'm still unable to give myself a break. I always feel like I should be able to do more.
You’re so welcome. It’s SO hard. It doesn’t help that we are taught by society to ‘play through the pain.’ We’re indoctrinated to view sickness as weakness - a moral failing. So of course it’s hard for us to give ourselves a break.
But we deserve it - and we should be kinder to ourselves. Easier said than done I know but I hope my articles helps people find a way to let go and move towards acceptance.
"Walk it off!" is such terrible and damaging advice.
It is indeed. All too common though! Most of us go through quite a few doctors telling us ‘nothing is wrong just play through the pain’… and the more we push the more damage gets done.
I had a physical therapist tell me that it was normal to be sore after work. Ma’am I sit at a desk all day processing mortgages. No I shouldn’t be in this much pain from sitting all day.
I snapped at her and I told her I used to wait tables on the second floor of a restaurant when the kitchen was downstairs so I certainly know what sore after work feels like, and that’s not it.
Yeah, she had actually herniated one of my discs further with traction.
This wasn’t pain from processing mortgages.
Oh and the worst part was this woman put in my notes that I was improving with physical therapy because she wanted to make sure my insurance company would approve as many visits as I wanted. I told her I had 20 visits and she didn’t believe me. This caused a huge problem when I had to file for disability.
Except I guess now it’s on record at the SSA that this specific physical therapist can’t be trusted because I told the ALJ EXACTLY why she wrote that & he compared it to my other medical records from that same time period and nobody else said I was getting better.
I know that’s not relevant to the topic of this newsletter, but I wanted to put it here for anyone who might be going through any kind of litigation regarding their health. It’s really important to look at your medical records like you would your credit report to check for errors Especially because the errors get out there through Referrals and what not it’s almost impossible to correct them.
The things they will tell us are 'normal' never ceases to amaze me. Things that are objectively anything but 'normal'. It does so much harm because many patients will believe them given they are the 'experts' - and it just leads to more unnecessary pushing and damage to our bodies.
I stopped trying to deal with sleep medicine because the advice they give healthy people for insomnia doesn’t really work for MECFS.
If I wake up in the middle of the night I probably shouldn’t just get up and do stuff until I feel tired enough to go back to bed. I’m always tired enough to go to bed it doesn’t mean I sleep lol
I only have a few hours a day I don’t want them to be between 3 and 6 AM.
Then they try to tell me not to nap as if I have any control over that lol my battery just dies. I have no say in this.
Yeah I have a story, friends sister-in-law was pregnant and had terrible back pain. So she said something to her orthopedic surgeon husband who told her that that’s just pregnancy and she should suck it up.
The back pain kept getting worse, still told to suck it up. So she did.
Then the baby was born and the back pain didn’t go away, it turned out she had spine cancer I guess the pregnancy hormones lit it up, she had no symptoms before pregnancy.
She died before her baby was four month old, and within six months he married a nurse from work so he’s fine. That poor little girl won’t ever remember her mother. And the poor woman, all that suffering because “pregnancy causes pain, suck it up.”
That's absolutely terrible. We need to banish 'suck it up' from the medical vernacular. Don't tell a patient it's nothing or that they should ignore it - run the tests and MAKE SURE you're not missing something.
I suppose HE won’t say that to his ortho patients anymore, but the pro forced birth stuff that probably comes out of his mouth now after she grew a whole baby while dying. Ugh
Also this is why I love my PCP. I had some really weird big toe joint pain twice last year, randomly. He had me do some x-rays and he checked my blood for gout signs. Nothing. Then I found out “big toe joint pain” Is such a telltale symptom of perimenopause that it’s kind of a joke on Reddit in those subs.
When I saw him yesterday I told him I’m pretty sure that’s what it is and that I appreciate him for not just telling me “it’s hormones” because I would’ve been really mad about that. He laughed and he said well I at least like to rule out other things before I just blame hormones, and he actually never did I had to stumble upon that myself. I appreciate him and I told him. If anyone gives him Covid and takes him from me I might go for vigilante (JK, probably)
Acceptance seems to come and go for me. It’s like the never ending spiral of grief that hits over and over again. I started the cycle again recently and d think I’m now back in the bargaining phase again. Trying to trick my body into feeling better. Luckily I’ve been there many times before and can take it all lightheartenedly. I think the one thing I’ve really accepted is that by the time any treatments are found and allowed on the NHS here, I will very possibly be in my grave. Progress has been almost non existent in my 15+ years.
It comes and goes for me too - I try and remember to take it all in stride - but some days are easier than others. Last night and most of today have been horrible symptom wise. I’m definitely in a crash and yet I was beating myself up for not responding to comments quicker.
The irony eh? Can’t even take my own advice! I’ve been diagnosed for close to a decade now and very little progress has been made in that time. I thought Long Covid would bring faster progress since it’s disabling people in such record numbers - yet most of society seems intent on ignoring it and looking the other way.
I agree that acceptance is a hard road, and also with your acknowledgment that even once you’ve been able to somehow get there, it isn’t just done and dusted - I had a fit of rage about my MS just last week that seemed to come from nowhere! I guess acceptance is also about accepting all the feelings that come along, good or bad.
Thank you for sharing this part of your story. I relate to these sorts of posts being hard to write, so I hope you’re taking extra care of yourself. 💗
Thank you Jane - and I’m sorry to hear of your fit of rage last week. But I get it! I had one tonight after posting 🤦♀️
I was so proud to have the article published - but then I tried to write a summary to share on social media and my brain completely gave up on me. I felt irrationally angry because it wasn’t “fair”. I didn’t want to deal with severe brain fog - I wanted to enjoy getting an article completed.
Unfortunately chronic illness so rarely cares about what we want - hence the importance of learning to let go!
Excellent points, I can’t even tell you how many times I’ve started gaslighting myself since I thought I gained acceptance. At least now I can catch it pretty quickly, whereas before I would have to crash myself before I would stop telling myself I am not that sick.
Catching it quickly is an important skill! I still do it too - but the faster we catch it and change the narrative the better we're likely to feel.
Thanks for sharing. Would love to see a post about the recipes you keep mentioning. Healthier eating seems expensive and time consuming to me most of the time.
Thanks for commenting! A lot of people think healthy eating will be too hard or prohibitively expensive - but it can be done quite economically and there’s a ton of time saving tips and tricks too.
I will be sure to include some of the ways I make it quick and easy when I post my recipes.
Oh yes, I would love to see the recipes too. Maybe I’m having a PTSD reaction but I’m really worried about our food supply since it seems every time I open my email there’s some kind of a listeria outbreak or something. I stopped using Animal products, I’m currently using oat milk in my coffee but I would prefer to make my own. At least I know the water has been filtered and the oats at least claim to be organic.
I get worried about that too - it seems to be getting worse. The good news is it's really not that hard to make your own and infinitely tastier than store bought! Will work on some recipes :)
I'm sorry your inner monolog was so cruel. Bad enough when we get that from other people, but it's harder to cope when it's from your own head.
I'm grateful my head never did that to me. Doctors kept asking me questions about why I thought I was sick and whether I blamed myself. It seemed so odd. No? I didn't choose this. No one did it to me. Some people are tall, some people are stocky, some people have brown hair, some people have killer immune systems that try to destroy their own bodies from the inside out. These things happen.
I learned through meditation (self-taught zen) to accept what is. If it's no one's fault, there's no one to blame. If you can't change it, there's no point wasting limited strength fussing about it. Anger comes from the subconscious. You can't control that. But you can take a breath, look at the situation, and decide whether it's worth feeding that anger your energy or whether it's better just to step out of the way and let it flow past you.
I spent a long time in my adolescence trapped in bed, too exhausted to sit up, pain moving with a will of its own across my body. Where would the next spike be? How long would it last? Would it be a sharp spike, a deep broad ache, pins and needles, all of the above? No way to know. Nothing to do about it. Nowhere to go. Nothing to distract myself. (This being in the days of large computers and dial-up internet that charged by the minute. I had books by the stack, but it's hard to read when you're body is on fire and your eyes don't want to focus due to extreme fatigue.) All I could do was lie still and think. I had to accept the pain. It wasn't pleasant, I didn't want it, but I couldn't change it. Accepting it as a fact of life was the only option. Meditation helped a lot.
But it was much harder a decade later when my mind went, too. My body was working better (in part due to the development of pain meds that actually work on me), but I lost most of my higher processing power and had to completely relearn how to think and talk. How to cope with executive dysfunction. I spent years going to every doctor, going through every test. I even had antimatter in my brain. (The P in PET scan stands for Positron. A short-lived artifical isotope radiates subatomic antimatter, and the bursts of radiation produced when those particles collide with regular electrons can be easily pinpointed by the scanner.) To no avail. I finally learned it was a known symptom of my existing neurological disorder. The chronic pain I'd been living with for so long was caused by my nerves being hypersensitive to everything, and my brain basically just wore out from being constantly flooded with excess signal.
I'd coped with my body failing me by focusing on making the most of my mind, and now that was going away, too. Learning to accept that as something else that wasn't going to change was the hardest thing I've ever done. It meant giving up on the goals I'd spent a lifetime working towards. Studying hard in school, learning as much as I could, getting into MIT, laying plans on a career as an engineer designing better medical equipment... All gone. No longer physically possible.
Honestly, I don't know if there's a next step. Another direction. Something I've missed. I hate feeling useless. But I know I'm better off accepting reality. Which doesn't mean I stopped going to doctors and looking for new rocks to turn over and new barrel bottoms to scrape. But it does mean learning to live within my current limits. Not to hurt myself trying to do things my body can't handle. Not to punch myself in the head getting worked up over things I can't change. Not to keep banging against walls I can't move.
But the flip side of accepting the pain is equally important. Make the most of your joys. See a cool butterfly land on a pretty flower? Live wholly in that moment, letting everything else go, and just enjoy the heck out of it. Yes, there's a sunset every day, but each one is a unique experience. Take a moment to bask in it. Have a stupid joke? Great! Laugh at it with your whole heart. Embrace your joy. Savor it. You need it and you deserve it.
(And finding you has been a joy.)
Thank you so much for sharing - and let me say that you are FAR from useless. Never forget that.
I understand how much harder it is when your mind goes as I have that issue too. My hypotension causes severe brain fog and lack of oxygen to the brain - and when that happens I can’t do the ONE thing that has gotten me through all my suffering and difficult times of the past - write.
It’s devastating. Being unable to communicate and form coherent thoughts is one of the most unsettling feelings I’ve experienced.
But your contributions here are SO welcome and valuable for the chronic illness community! I think we all need to remember that no matter how sick we are or how much we’re struggling - when we show up for other people and try and help them - we are doing an incredible amount of good. We are bringing joy to someone else - and perhaps to ourselves as well.
It really sucks when you feel your mental capacity go. When you try to get your brain to just do what it's always been good at doing, and the bottom just falls out. The thought trains derail. I'm sorry you've had to deal with that, too.
But your writing is always clear and valuable. It saddens me to see you second guessing yourself. I understand. But I think you deserve a lot more credit than you seem to give yourself sometimes.
My thought train is derailing big time right now - I can’t even write a post to share this post anywhere else (oh the irony)
Thank you for saying I should give myself more credit - a lot of my friends say the same thing. I’m working on it - but just like “letting go”… propping myself up has never come easily to me !
You've already written an introductory note for this post. That's a good start.
You don't have to post about it right now, anyway, if your brain is locked up.
But if it helps:
Coming to terms with the new reality of having chronic illness is hard. Here's how I learned to come to terms with it, while still working to make the most of my life. It's the third post in my MCAS series, but it applies more broadly, too.
How does that strike you as a short and sweet intro? Can you rephrase from there? Does having that start help get through the fog a bit?
I had something semi drafted a few days ago (thank goodness) that I was able to clean up through the fog …. But I will save this and perhaps use it down the road! I tend to share things multiple times since a lot of people miss it on the first pass.
I can relate to this so hard. I used to handle peoples mortgage or divorce flawlessly. Now I forget all kinds of things. Brain fog has me reading directions wrong then very confidently doing things wrong. And it’s so painful when I discover it because I used to be smart.
Just yesterday I was laughing with one of my girlfriends because I was telling her how frustrated my medical providers must be when I go back-and-forth between being offended when they explain something like I’m five because “I’m not stupid!!” and “Don’t you know I have brain fog, explain it like I am 5!”
We discussed it and I decided it’s better to let them think I am dumb than to let them think I am competent and on top of things.
I'm sure you are competent. But you still have struggles. And those can be up and down. Sometimes you do need it explained like you're five. But that doesn't mean they should be condescending about it. It can be hard to find the right line. Especially with doctors, who are less likely to treat you as a credible partner in care if they don't think you're on top of things. Having my dad (a now-retired physician) along with me on medical appointments made such a visible difference in how doctors treated me and my self-reported symptoms.
It's so frustrating that we still need to bring a male and/or a healthcare worker with us to be taken seriously. I'm percolating on another article about this and specifically the case of Gisele Pelicot - where doctors deferred to her husband instead of protecting and listening to her.
I'm watching a PBS Newshour segment on a child who was abused and had to prove herself after the cops got her convicted of lying about it. IDK if it's too traumatic, but it feels like another aspect of this same issue. Men in power just not believing women, gaslighting them, blaming the victim, protecting the abuser, and just utterly failing at what they're nominally supposed to do. https://www.pbs.org/newshour/show/florida-teen-forced-to-collect-her-own-evidence-to-prove-she-was-sexually-abused
It's an important topic that should be discussed more often.
Oh yes I remember those those weird questionnaires I was getting them a lot back in 2018 and I believe the medical facilities I was going to were getting extra money for doing “depression screenings”.
I started refusing to complete them because they don’t take into account chronic illness. If I don’t have the energy to do fun things and I don’t have any money to do fun things, I’m not doing fun things like I used to and it has nothing to do with depression.
Anyway, You can refuse to complete those questionnaires and I recommend it. If you get labeled with depression and you need any kind of pain management you may not get it. Don’t do it
Also if you are a victim of childhood neglect or abuse or have any kind of childhood trauma and you need pain management don’t tell them anything bad about childhood. Don’t let that stuff get in your medical records if you think you need pain medication in your life.
And then there is the other layer to this - other people's expectations. I had to give up working at the beginning of 2018 and had my second heart transplant in October of that year. At my one year checkup, they found the disease that destroyed my first transplanted heart and put me on some meds to stop the progression. Those drugs kick my ass. I know I have my best energy in the morning, so I push myself to get as much done as possible by lunch - writing, errands, administrative work. At lunch, I take my meds and eat, then an hour later I'm on the the couch sick as hell. That lasts until 3 or 4 then I get up and do some light housework and make dinner. After dinner, I'm back to normal until bedtime. I begged the doctors to let me try going off those nasty drugs, so I got a three month reprieve during the summer of 23. My next checkup showed that the damage from the disease had doubled, so I went back on them on an even higher dose. Every day at lunch and bedtime, I take those damn pills. At least I sleep through the second dose side effects.
Just this week, I mentioned to my husband that he seems distant and asked if he wanted to do something like a spontaneous weekend away. His response gutted me. Basically, he sees me as someone who is always "lying on my ass" and not any fun. This despite the fact that I do 100% of the cooking, cleaning, laundry, grocery shopping, and care for our dogs. Now that he's retired, he wants me to be there to entertain him. For 20 years, he would get cross with me when I wanted his attention because he was too busy or too tired because he was always working. So I found other things to occupy myself, like my writing career. Suddenly, he's the one who feels neglected.
I haven't found the answer yet. I can't stop my meds or I will die. But if I don't, I may lose my marriage. Chronic illness is hard.
I'm so very sorry Dawn and I'm sending you the biggest gentlest hugs. That's terribly hard. It's one thing to manage our own expectations and a whole different beast to manage the expectations of others.
I'm sorry that your husband feels that way - especially when I know how hard you're trying to do as much as your body will allow.
For what it's worth - I'm proud of you for taking the pills even though they make you feel horrible. You're protecting your heart and doing what you NEED to do - and I hope in time your husband can see and understand that.
Can I do anything to help? I'm certainly not someone who's qualified to give marriage advice - but I will happily be a virtual cheerleader for you and encourage you when I can. We all need it from time to time!
I just need to be very judicious of my time. Today we went to an orchard and on a nature hike. We had a lot of fun! Then I took my meds and slept all afternoon because the combination of drugs and activity knocked me out. When we got up, I went with him to pick out new glasses at the eyeglass store. Dinner was reheated leftovers because I had zero gas in the tank for cooking a meal. He's happy again. Now I'm catching up on my emails and messages from the day.
That sounds like a really nice day! Glad you were able to enjoy that time together and also conserve your energy where needed 💜
Spot on and beautifully put, BBT. xo
Thank you Sandra! It's a devastatingly difficult thing to do - but oh so important!
It IS the hardest thing! I was/am a type A: got a task list for the day and that thing is getting done! But no more. Today I just want to sit and cry because I thought I was going to have a good one. So, I try to do something TOTALLY FUN and just for me. I've worked hard and I deserve the rest my body craves. After all, I'm 69 yo and not done yet!!! Thanks for the reminders; we all need help sometimes
You’re so welcome! I’ve been the same today - I actually slept fairly well and thought it would be a good day - only to end up in a terrible flare unable to get anything done. I’m super late responding to messages as a result and really frustrated with myself.
I need to learn to take my own advice! But it’s also important to remember that even though we can KNOW that we need to let things go and be kinder to ourselves - sometimes it’s a very hard thing to do. That’s ok too - no one gets it right 100% of the time!
I just wanted to note that if you are in the US and you are on disability, unfortunately we have to keep seeing doctors even if there’s nothing they can do. Maybe not everyone, But I get reviewed every two years and if I’m not under the continuous care of a doctor they can stop my SSDI
I actually lost a year and a half of backpay because I didn’t have health insurance so I was only seeing my PCP because he would bill me later. I didn’t fight it because I really needed income, but it wasn’t right.
I should not have had to lose a year and a half of monthly payments simply because I couldn’t afford to see a doctor when I had zero income.
I became disabled in 2012 but I didn’t actually get an MECFS diagnosis until 2019. I didn’t realize I was chronically ill until a nurse at my PCP’s office the year before got mad at me for calling about my symptoms and she yelled at me and told me “you have a chronic illness!” Weird they wouldn’t diagnose me but they would yell at me for not realizing I had one.
Anyway, I actually felt like I got into remission in 2020 because I started LDN and I was allowed to rest. We finally got telemedicine so I didn’t have to drive all over the state to talk to specialist who weren’t going to be able to help me anyway, we could just have a phone call.
It was truly amazing how much better I felt, and I know a lot of it was the LDN, but simply not having to run around looking for answers getting stressed out about the gaslighting really helped.
I think I’m almost at the point of giving up on them again. Thanks to women on social media I realized some of my weird foot symptoms are simply from perimenopause. That’s also why my ADHD symptoms are not responding to meds like they used to. On one hand I appreciate my PCP not blowing me off by telling me it’s just my hormones, but after he ran tests he could have suggested perimenopause. Nope, he left it to me to figure out for myself like usual.
So yeah, I’m done dealing with medical providers until warm weather rolls around again and I want to go outside. Then maybe I’ll start complaining again about being sick to go outside every day.
Anyway, this whole rant was simply meant to say that Covid actually helped me gain acceptance, and I was really excited thinking that the rest of the world would gain better understanding about MECFS because of long Covid, but unfortunately I still have to explain to every medical provider I see that it’s a neuroimmune disease and no I won’t take this mask off.
I'm so sorry it's been such a struggle Maggie - I hate that we can't even access safe healthcare. I too felt considerable hope when Covid began because I assumed Long Covid would be a problem 'too big to ignore'. Clearly I underestimated the depths of people's denial!
I'm working on a series of articles about masks in healthcare that I hope will move the needle and help bring mandatory masking back to medical facilities (or at least convince individual healthcare workers of the value of masking for their patients).
Oh totally get this!!
thx 🌹🌻🌸💐💚💛💜❤️🌼😍🥰
Thank you for taking the time and expending the energy required to share this with everyone. From what little I have read so far, it seems as though your journey with chronic illness has been much more severe than mine, but much of what you have said resonates with me, especially when you say "When we start prioritizing letting go - when we move towards acceptance and release the need to control everything - we can begin to find peace."
I have lived with fibromyalgia, alopecia and various other unexplained symptoms for about 8 years. After many years of fighting the symptoms and trying to overcome them, I surrendered. That was when I started to learn from the experience and find the hidden gifts within the symptoms.
Surrender and acceptance may not bring a physical cure, but they can bring profound healing and inner peace to both body and mind.
I look forward to reading more of your insights in due course.
Best wishes, Rob
Hi Rob - thank you so much for this kind comment! I completely agree with what you said about surrender and acceptance - the healing and peace they can provide can not be understated.
Thank you for this. My inner monologue is brutal, and I wonder sometimes if the increased stress from it is encouraging inflammatory processes, making my nerves more mad/less able to heal. It’s so hard though.
I definitely think stress promotes inflammation - but it’s not an easy thing to let it go or to adopt a mindfulness practice. I think the best thing we can do is just to try - every time you succeed it does reduce stress!
This is so good! Also, hello from another Type A-er. I've had such a hard time accepting my disability (even though I've had it my whole life) and have definitely been going through the "why am I bothering because stuff keeps happening with my body anyway" so thanks very much for this piece. Very helpful 🫶
You’re so welcome! I go through the “why am I bothering” on a regular basis. You’re not alone. I think it’s a natural response when things just seem to keep going wrong.
I always remind myself that we can’t know what it would be like if we weren’t trying so hard. If we stopped taking care of ourselves - tbings would probably be much worse. That helps me sometimes 💜