For such a long time I had no idea why emotional situations made me sick. And not just your typical exhaustion after a shouting match, but an actual ill feeling that would last long after the emotions went away.
I now know one of the hallmarks of ME/CFS, the disease I battle everyday, is an alarmingly low amount of cortisol, a hormone essential to how the body reacts to stress, including blood pressure and immune responses. This, among other near non-existent hormones in my body, makes it almost impossible to be fully, if at all, present in any given situation. Whether it’s a hostile argument or a lust-filled kissing session, I feel the emotions these situations conjure so intensely, my body often can’t process them. Instead, it panics — my heart rate soars past its anaerobic threshold and a band of extreme nausea, muscle pain, and sensory-sensitivity send me crawling into a fetal position.
This has happened countless times since I first got sick in 2010. Over the years I have learned how to detach myself from people and situations because I simply cannot process the emotions they create in my body. To those unfamiliar with ME/CFS, I imagine this may sound like a simple process — things get emotional, then I flip a proverbial switch so I don’t feel mad or sad or anxious or any other emotion. But in reality, it’s much more complicated and often painful.
Before getting sick I was never one to shy away from emotional situations. In fact, I often embraced them instead of hiding my feelings. I’ve always been someone to talk things out and express myself, at times perhaps too much. Nonetheless this is the type of emotional and sensitive person I have always been — a person I’ve always been proud to be.
One of the first memories I have after getting sick was having to suppress my emotional side. I was robbed of my emotions, but not in their entirety. To this day I still feel, I’m still human, but my emotions are now tainted by an evil disease. Any catharsis of anger is immediately thwarted by a slew of symptoms. Any elation from excitement or euphoria from pleasure is smeared by a sinister malaise.
Even after the acute phase of the illness, I found myself unable to cope with stressful and emotional situations. The most dramatic example was after my nephew, Thomas, passed away a week after his birth. I remember riding to the hospital, tears deluging from my eyes, my face bubbling with emotion. Within minutes, I felt the physical effects of an emotion overload. Later that night I got home and my body crashed from all the emotions. Sure, the physical exertion of walking around the hospital that day made my symptoms worse, but it was the emotions pulsing through my body that sent me over the top. I spent days in bed recovering.
Perhaps the saddest part of getting sick from experiencing my emotions is having to decide whether feeling — raw emotion — is worth being ill. So many times I’ve been faced with a dilemma of whether to fully experience situations and the emotions they create, only to deal with the physical consequences, or to withdraw and detach myself to preserve what little health I have left.
A few weeks after his death, my family and friends gathered to celebrate Thomas’ life. The dilemma was never more evident for me. Everyone in my immediate family got up to speak at the ceremony, but when the opportunity was presented to me, I just couldn’t do it. I’ve always regretted not saying anything. But as painful as my remorse has been, I know I made the right decision. I know I would have made myself so incredibly sick by speaking at the ceremony. The physical exertion of standing for an extended period of time, mixed with the cognitive struggle to piece together coherent sentences, on top of the emotional toll from my nephew’s death and witnessing the heartbreak of my sister, would have put my body in an emotional state it couldn’t have afforded.
I have, unfortunately, had to learn this lesson the hard way through trial and error. I have essentially taught myself how to survive and cope with a lack of vital hormones by avoiding them whenever possible. In many cases, my decision to detach myself from an emotional situation comes down to factors like the severity of the physical repercussions I will endure afterward, as well as how important the situation and people involved are to me.
It’s not that Thomas wasn’t important to me, it’s that he was so important to me the reaction his death created in my body was unbearable — not detaching myself in the way I did would have been catastrophic. At the time, it was a heartbreaking reality to face, one I inevitably had to suppress in order to protect my physical and emotional health.
Some people may wonder why I haven’t tried medication to replace the hormones I lack. Well, I have. I take hydrocortisone to boost my cortisol levels. Unfortunately, the dose I take only elevates my cortisol for a few hours, then it drops dramatically. When I increase the dose, for whatever reason, my body simply does not react well — I crash for weeks. I have a similar reaction to fludricortisone, and most recently, midodrine. So it’s not like I haven’t tried to fix the problem. At this point, I have to hope my cortisol, and other deficient hormones, returns to normal levels naturally, because experimenting with new medications is even more dangerous than putting myself in an emotional situation without vital hormones.
I hope, one day, my body will be well enough to revisit the many events and people from whom I have had to detach. Then, I will be able to process them in a healthy way, not neglect them. For now, my blog will have to suffice, and so far it has. The posts I write are how I cope with having to detach myself from my emotions, it’s a way to talk about how I feel without making myself sicker. It has helped tremendously. So if you are reading this, thank you for giving me an outlet!
*So if you enjoy my posts and want to know my darkest secrets, please subscribe below. Okay, maybe not my darkest secrets, but still, some pretty juicy stuff.
Sorry about your nephew. You have expressed very well how emotions effect those of us with ME/CFS – just one of the elements of life that invades us. My recent poem alludes to this – I went to an Open Mic, forgetting that the excitement would be too much for me – there was backlash, of course. So hard for others to understand this disease – keep writing.
Thanks VJ. I’m glad you are doing open mics. That’s awesome.
Just did one – might have been too much, but I will try again.
I agree. Keep writing, if that’s a safe way to express those emotions. Is there ongoing research for this disease?. I know Change.org puts out petitions for different things.
Hi there. There’s some great research being done but there’s a severe lack of funding from the government so it has virtually all been funded by private donations. My friend actually started a petition and it has more than 40,000 signatures.
Cool! Good luck to you.
Sincerest regrets on your loss. I don’t know much about the condition that has sapped so much from you but its commendable how you have chosen to fight and vent about it, rather than give up and be embittered. All the very best and I hope you recover soon.
Thanks Pradita! That’s very sweet of you!
You’re welcome 😊
So… I hope I’m not asking too much from you… I’m hoping you’ll share a bit more of your experience with me…
I’ve just recently started on fludricortisone, and I have been experiencing very strange unpredictable crashes. I crashed yesterday while resting in bed and without having exerted myself the day before. It’s not unusual for me to sense a crash coming and stop being able to speak because I lose my voice, or see spots before a migraine, or have muscle twitching before extreme weakness, however, these things happened and this was the first time I wasn’t able to transfer myself from my wheelchair to take care of “business” in the bathroom. My legs couldn’t hold me. I couldn’t lift my water to take my meds. So some of this was unusual, and some of it wasn’t. I know it gets this bad and much worse for many severe PWME. I’m just trying to figure out if it’s possibly the medication that I’ve only been taking for about 2 weeks or less, or if this is just my progression of my illness. So, if you’re willing to share about your experience about how exactly fludricortisone made you crash, I’m eager to hear your experience. Also, were you taking sodium or potassium with the fludricortisone?
I really enjoy your blog! Thanks for being candid, authentic, and funny as hell! On this post I do want to send you my sincere regrets for the loss of your nephew and how you had to cap that emotional experience. ME so sucks! As you describe it even takes away a layer of how we emotionally experience the world as well as how we do so physically… I’m feeling the loss with you…
Warmly,
Jes
Thanks for your kind words Jes! I knew pretty quick that the fludricortisone was make me crash and I took a very small dose I think. Half a pill maybe. My advice is this: of you have any suspicion that it is making you crash then stop taking it. You can always start again and it may take stopping it to realize how much worse it was making you. Also, because you are feeling worse the drug is at the very least having no effect and at worse it is the culprit. If something isn’t making you better there’s no point in taking it. Hope you feel better. Have you tried IV saline?
Yes… the IV saline seems to help a bit, but leaving the house to get it has been difficult and expensive… ho hum… these decisions suck!
Thanks for your response. My heart rate is lower… But your right, if I’m crashing, then who cares!!!
I get my IV at home. An infusion nurse comes out. It’s expensive but has helped me so much.
I have Lyme & Bartonella . I used to be able to show emotion but I really have to watch it since it attacks my nervous system . I am wondering if this could be related . It sucks ! Wondering if this ever will pass ?! I can only hope .
I bet it is related. I was recently diagnosed with Lyme, I should probably start including that in my posts but I’m still kinda in shock about it.
Shocked about Lyme ?
So Lyme depletes everything – seratonin , vitamins etc . I also have Bartonella – attacks nervous system . Gives the horrible symptoms you describe in blog . Healthy looking on outside – but dying inside from electric shocks, numbness, burning pain . My heart aches for you as I know how I daily must deal – it sucks !
Yeah, definitely a surprise. I haven’t had a tick in at least a decade. Weird stuff.
So spot on. Well done for sharing. I have such a similar story. I hope to share with you sometime. This week I’m trying to put on the war paint and pretend to cope with 2 pantos and a school nativity (you’ll definitely have to google if you’ve not been to the U.K!) My sister took her life 2 years ago and it’s a daily struggle with 2 young kids living in a different town to pretend. They don’t understand m.e…neither do my dwindling friends, family or old colleagues. I’m having to give up my primary teacher (elementary) job that was my life and don’t know what to do. There is always super mum left, for eternity I hope, to save the day! So much more to say but no energy to do it today. Stick in, I’m with you Hx
Sent from Heather 🙂
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I’m so sorry to hear that Heather. Sounds like quite the struggle. Stay strong, hope it gets better soon!
I’m so sorry about your nephew.
You express this so well, I feel very lucky to be reading your posts, thank you so much for sharing all that you are here..
Thanks Katy!
I didn’t know that ME/CFS was a thing until reading it here. I’m sorry for your struggles and with your nephews funeral as well. I’m hoping time will help heal your struggles.
Thanks. That’s very sweet of you!
Hello
Verry interesting blog, sorry About tour nephew! I have also a low cortisol problem and I understand the problems. I am from Belgium and my English is not gold. I can read it better than writing….
Greetings
Chris
Thanks Chris! I appreciate the effort you made, your English seems pretty good to me!
I’m finding it a real help reading your posts, both reassuring and an eye-opener – I’ve had ME/CFS for 30 years and because quite a lot of that time I’ve been able to function just enough to be able to cope (mostly), I’ve been in the habit of trying not to think about it too much or spend a lot of time researching or trying to understand my symptoms. (I get exhausted, researching!) But this thing about emotions – something I’ve always acknowledged – I never knew it had to do with hormone levels and cortisol in particular. I have to do the same thing as you do and detach myself from any strongly emotional situation and I NEVER understood why – and now I feel more able to allow myself to do this, and perhaps to do it in a more managed and responsible way which in turn will help not just me but others around me. You seem to have understood this really well. Such a good post. Thanks again!
Thanks! It took me a long time to figure out why this was happening. I just figured it was an energy thing but a deficiency of hormones never occurred to me until I got tested. I definitely recommend testing cortisol and other hormones. Thanks for reading!
It takes courage to share and you are helping people with your honesty and words! It intrigues me to find out more about the disease you are suffering from. I have, what I feel like, are severe issues with talking in front of crowds or even just in a classroom of people. When I was young I was a very outgoing child and had no problem getting up in front of people, performing, or reading in front of large crowds in church. Once I hit a certain age, I got so freaked out by the thought of talking in front of or just amongst a group of people, in a way that makes me feel like I am hyperventilating. I start to shake, my voice quivers, I can’t breath right even when I try, my heart races uncontrollably, and I don’t even know what I am saying half the time. It is odd how we sometimes live with these issues but never really think, there might be a name for it and an explanation other than, stage fright. Thanks for sharing!
You are so right. I mean so stuff is normal but there are all kinds of conditions that have to do with hormones. The body is such a complex thing, an amazing thing, but so complex. So much so it’s kind of amazing that it often works as well as it does, or at all.
Definitely! From what I gather I have severe social anxiety disorder, and I am experiencing a panic attack. I hate how uncontrollable it is, uhhhh! When you talked about hormones it made me think, this really seems like it started happening when I hit puberty. Hormones suck in so many ways, for me at least!
I also recently discovered I’ve suffered from IBS my whole life. I just considered it having a “Bad Stomach.” It is nicer to know, though. There is something really important in knowing your not just crazy, other people have it too!
I agree. At the very least there is the saying “misery enjoys company.” Did you ever see the movie the King’s Speech? Is your experience like that?
Yeah but I don’t stutter, or at least not that I notice. I can’t imagine being in front of that many people though! The worst part is I don’t always know when I am going to need to take something for it, but maybe I should have something on hand for when I do. It also seems I feel a lot better if I know everyone really well who I am talking to. I also helped myself by drinking a little bit of wine before public speaking class in college. It seemed to calm my nerves.
I am so sorry for your loss.
It is hard to be in such a situation at any time, but to also be ill- that’s a lot of added stress but it is a no win situation.
For what it’s worth I think a lot of people who do not have ME/CFS go through their own type of grieving and some seem to use a similar strategy for it (whether intentional or not)… there are many ways to handle the personal process of grief. But to people with the illness when that is not our way, it just feels like one more thing we have lost
One often hears of physical pacing, I wonder if “emotional pacing” is also a viable technique.
In my mental health treatment (non ME/CFS related) I have heard of allotting time for certain emotions or sometimes disordered behaviors (which grief and self preservation in the case of ME/CFS are certainly not). I wonder if it feeds on a similar principal- where with the physical you rest before and after and exert in small controlled doses.
I have had ME/CFS in the (unofficially) severe category from what I can tell for over a year now.
I hope in time you find some reprieve from this illness (and that we all do) and that you are able to grieve without having to fear or suffer consequences.
Good point. Emotional and cognitive pacing is so important. Your “allotting time” comment reminds me of this poem:
The Guest House
This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.
Be grateful for whatever comes.
because each has been sent
as a guide from beyond.
— Rumi
Loved your post and I feel echos for me that emotionally I know I’m out of control and have been all my life. Can I ask how you have managed to detach yourself emotionally. I’m trying calming techniques for my mind using autogenic relaxation, mindfulness and heading for aggressive resting from 1 January including Internet free days, slowing right right down via my heart monitor and other methods, but would be interested in what you have used to help. I find a couple of close family relations really cause my emotions to go mad. I’m limiting involvement when I can, and realise I have choices … Tricky often though!! Thanks. sally
Hi Sally. It’s really tough. I write in order to detach myself, at least physically. I’ve also used meditation but it’s been awhile. I listen to audiobooks too. Anything that works. Thanks for commenting!
I can so relate to this, I am in a crash with a bad respitory infection from getting angry. People coming into my environment sends my body into chaos. It sucks and disconnecting and letting things go is a survival mechanism. I am using supplements to rebuild my adrenals and cortisol levels. I hope you find what works for you. Sorry for your families loss, so very sad.
Hi Lisa. Hope you feel better. It’s the ultimate humbling when your body gets sicker from anger. I’ve learned the hard way too.
I wont claim that i have understood the misery you are going through but i can assure you that you will get over this soon . Loved the blog mate.
Thanks so much! I appreciate the love!
I can understand you Jamison, though I am going through a similar phase in a different way. To share with you, one of my darkest secrets is acute clinical depression, which holds me back from enjoying the simplest pleasures of life. It’s always dark in my world and I know I am not what I used to be.
I imagine that is really tough. I get depressed and it just hangs there, but eventually it passes and then comes back and then passes and so on. Stay strong!
Thanks a lot
Hi it’s always comforting to read someones words on their struggle, I have Fibromyalgia and a couple of other body hiccups as I’m now calling them. It’s comforting knowing someone else understands but the flip side is sadness that your going through it too.
It’s important that more people get to understand that however invisible ME, CFS & Fibro are that they are very real and completely life altering, I’m still learning to forgive myself for not being the person I once was, we put so much pressure on ourselves it’s right to allow yourself to stand back your not letting anyone down. x
Jamison, I’m guessing you had your cortisol levels tested before starting hydrocortisone with a 24 hour salivary cortisol test? I hope so. The reason I mention it is it sounds like you may actually have high cortisol, or it’s elevated at times, then perhaps drops too low? The overreaction to stress is typically connected to high cortisol, instead of low.
I would try to (very slowly, very, very slowly) reduce your hydrocortisone supplementation. I know that Jeffries wrote that book ‘The Safe Uses of Cortisol’, but it’s hardly safe, and although he says one is able to stop using it after a couple years, that’s typically not the case. Patients end up needing more and more…
You might consider whole adrenal extract or some other natural method of healing your adrenal glands. But of course ask your doctor before doing any of this.
Hey Kelly. Thanks that’s good advice. I test it both before and after starting hydrocortisone. Before it was below normal the whole day. Now it’s normal (not high) then it dives down below normal for the rest of the day. What is adrenal extract? I have you tried hypothalamus pmg supplement?
Hi Jamison…I have done Standard Process Hypothalamus PMG and it has helped me (now help doesn’t mean anywhere near normal) but it was refreshing to read another patient educate people that trying the wrong thing and thinking the standard protocol will work with our bodies can be dangerous. I have also used homeopathic adrenal cortex drops by Professional Formulas and has also helped especially in acute situations. I don’t know why it took me so long to find your blog..my family hosted the first screening of Forgotten Plague in WI…however after arriving late, greeting people and speaking I needed to leave the theater and never saw your segment. Everyone talked about it and it was helpful for people (b/c I’ve always been a bit more frail) to see that a strong man can get taken down. Wish you all the best. I also have found that IV’s with too many nutrients can crash me…micro dosing has worked decent for me. With regards, Heather
Hey Heather. I’m so glad you found me. Funny I just started taking Hypothalamus PMG. Boy do those pills taste and smell awful. How many do you take everyday?
Thank you for your courage in sharing all that you’re going through. I can’t even begin to imagine your pain. You are a very strong person and I hope that you find wellness again.
Thank you! That’s very kind of you.
I’m so sorry for your loss Jamison. I can’t possibly imagine how you must feel but my thoughts are with your family, especially your sister.
I always relate to and find such comfort in your writing. Thank you for sharing it and congratulations on your recent publications! Have a lovely Christmas (as lovely as possible that is) x
Hey Lara! Thanks. You are so sweet. Happy holidays to you!
I think your distancing yourself from emotions is a survival instinct. Before my father passed away, I was a heart-on-sleeve, very sensitive child. Afterwards, I detached quite a bit because it was what I needed to get through it. The hard part, for me, was that it continued for a very long time. My emotions didn’t actually go anywhere. They were just suppressed and eventually caught up with me. I’m much more open and more of that heart-on-sleeve sort of person these days, but it’s still a choice I make. For a long time, I felt guilty about the ways I coped as a kid–but then I gave myself a break because duh. So, I understand some of what you talked about here. I notice that it’s easy for me to revert to that old pattern, even years after I “dealt” with some of my issues, especially when I’m in stressful situations. I know it must be very hard to make those choices, and I’m sorry your family went through that loss. I’m sure everyone knew you’d speak if you were able to do so.
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