Stigmas, guilt, and shame
A friend of mine recently posted on social media about chronic fatigue and the shame she felt for no longer being able to do all the things she used to. How she no longer had the energy to feel ashamed and wanted it out in the open.
As I currently reside in that box too, it stirred me why we feel any and all mental states that aren’t outright happy as potentially shameful and perceived as a personal failures.
It brought back to mind an article I read some time ago about another even more stigmatised state of mind: depression. I started writing a response but ran out of energy…
Clinical depression is a change in brain chemistry.
Why we are told to be ashamed of this malfunctioning I don’t know. We’re not besieged by shame if we need to see a dentist, break a bone, or become iron-deficient? I know I have friends who would no longer be here were it not for chemical intervention in the form of antidepressants, and yet it is hush hush.
For the record I’ve been on half a dozen different antidepressants in the quest to reign in the migraines. They never did anything for me (except the one that turned me into a numb and uninspired zombie) so I assumed I couldn’t be depressed.
My English GP asked at the time if I was depressed and I said no… Fed up, angry, and frustrated, yes, and who wouldn’t become depressed when besieged by frequent migraines?
The only reason you are reading this is because in my perpetual hunt for something to lessen the migraines I tried something that put the depression on pause for me. Best sideffect ever I’m sure you agree! (It also greatly lessened the blinding waking headaches I’d been suffering, and allows me to get some sleep.)
Enter reading a timely article by Raimond E. Feist (from 2016, you can read it here: https://www.facebook.com/refeist/posts/10154669328183056 , I cannot recommend it enough) gave me the biggest lightbulb moment. A few days later I started reading it out loud to my husband but I only got about half way before I was sobbing.
THIS was the part that got to me:
“I remember a time when I came downstairs and realized I had left something upstairs and needed to go back upstairs and get it. Imagine standing there for a moment, overwhelmed by a feeling of helplessness, just incapable of climbing back up those stairs to fetch something forgotten, and almost being reduced to tears by the need to run back up and get what you’d left there. It is an existential moment of conflict those who’ve not experienced depression can not imagine. “You just pop back up the stairs and get what you forgotten. What’s the big deal?” The big deal for me was that was when I realized how sick I was and decided I needed to get help. My marriage was on the rocks, my wife hardly could speak to me, and my kids couldn’t figure out what was wrong with daddy, but it was my need to climb back up one flight of stairs to retrieve something and my momentary inability to force myself to do it that made me understand I was mentally ill, that I was in constant pain and needed to change things.”
That was me, minus the wife and kids. You see, if you’ve never know differently you start to believe that this is what everyone deals with and therefore I must be weak and lazy who can’t. Cue beat yourself up for it.
I‘d said “no” when my GP asked, because I didn’t know. I’d said no because I can’t remember life ever being any different. If you’ve always been depressed – how would you know?
I found out accidentally because my perpetual hunt for a way to lessen the migraines had led me to try yet one more thing, and that incidentally offered a window into a world without the veil of depression.
The pause on depression was a revelation. Instead of a daily inner perpetual battle not to cry 50 times a day, while at the same time being too exhausted to do so. Knowing if I do, a migraine will sure follow and I’ll be too whacked to do anything.
I never suspected anger was part of clinical depression – until it wasn’t there. Just gone. Maybe that’s why in my heart I never considered myself an angry person.
I have no problem with a bit of healthy anger. Anger is my ally, it can help lift heavy boxes, it is always fighting my corner, putting me first – even when I don’t.
Frustrated could be my middle name, where my mind works so fast and on so many tracks at once not even I can keep up, let alone get it out in a coherent form.
Like so many I was high functioning. My perfectionism and self discipline beat me with a stick and would not allow for less.
You Push Push Push yourself, until the day you no longer can, and then you still don’t let up berating yourself about it. You’re not trying hard enough! Are you going to allow yourself to be a failure? Others can do it so you just pull yourself together and f’kin get up and do it you fat lazy … and on it goes. You’re not “happy” “enough”, not grateful enough, not [fill in the blank] enough.
Then came the proverbial straw. It sneaked in the back door. Last summer I contracted something and the lingering exhaustion that followed never left. The inflammation in joints and what not I’ve had for years got worse. The migraines became chronic (the definition of chronic being ‘more days with than without’).
I gave up trying to keep up the apperance any longer when chronic fatigue set in, on top of the almost ever present physical pain. I gave in to the brain-fog. (Undiagnosed I will add, as this is Mexico and here it does not exist.)
This winter I’ve croched a storm, something I hadn’t done in decades. It’s been the only thing I could do with the fatigue, something that offered a tiny outlet of creativity – which is what I run on- and makes me feel I’m still if only remotely human.
Most of us still live in a world where listening to the body isn always practical or possible. Or we listen and ignore the signals because we don’t have time to slow down or don’t know what to do. I find myself trying to bargain with mine too, much good that it does, hoping it will hold together for an other hour, til I got this or that done. -I only have today to do this damn it, can you just f-kin keep it together and fall apart later, wait until I get back home please? I don’t have time for another migraine right now damn it….
Migraine (and other chronic pain dis-eases) is a robber no security system knows how to keep OUT. Chronic pain drains what little energy there is left. Inflamation drains too, and noone seems to have any idea why it won’t budge.
With chronic migraine you’re forever exhausted because if you’re not wiped out recovering, you’re almost certainly in what is called the prodrone, the build-up phase. Wooly headed, confused, foggy. Have you ever sat down in the supermarket isle and cried because you don’t know what to put in your trolly? Don’t know how to get back home because you can’t think straight and your body is just pain, lead, and jelly, all at the same time? How often have you sat where you are, to tired to even cry because you don’t have the energy to move and desperately need the toilet? Not that often I hope.
Then the supermarket stopped selling it here.
My world fell apart.
For TWO MONTHS I’d had a glimpse into a world I never knew existed. Of course I had suspected others did not feel like whole world was somehow conspiring against them. Before I suspected I was just weak or lazy. After all, that’s what I’d been told countless times before I understood my HSP temperament.
“It feels like hell. Clinical depression isn’t “I’m depressed,” as in “I have the blues,” or “I’m sad today.” Sadness is indeed one of the symptoms, but it is not simple sadness. Constant fear and anger are there as well, no matter how deeply hidden.”
“It’s a very difficult thing to share with someone who hasn’t been through it, because it’s a peculiar type of pain. It is mental pain, but it hurts just as much as any physical pain, but it never stops.”
As I ran out of tablets everything came rushing back. Once more the smallest thing and every task and chore felt like climbing mount Everest again, or like a personal insult. I was back fighting the urge to succumb to “wanting” to sink down against the nearest wall and rock catatonically; or beg to go to sleep and not wake up ever until the world has somehow righted itself again….
The nebulous fears were back, the ones that every day threatens to engulf and swallow me whole like mental quicksand. Suffocation by exhaustion.
My days are punctuated by a soundtrack of wailing sirens from emergency vehicles, and the almost daily news of shootings near and far.
Most days I wanted to scream. Scream at other people’s simple joys, because I’m jeallous; why don’t I attract something in my daily life that makes me feel glad to be alive? I feel nothing.
I wanted to scream at the never ending parties and repetitive music played by neighbours day in day out. It’s not that loud but it does not have to be if it feels relentless. With the hypersensitivity that accompanies depression, fatigue and migraines it becomes unbareable, like being poked repetedly with a stick or kept awake for weeks on end. It goes from being an irritant to something more akin to mental torture.
Depression robs you of joy. I don’t feel excitement; the best I can manage is is relief. Respite from the onslaught. There may be the odd day or hour here and there of contentment if you’re really lucky.
I feel love when the cats rub against my legs or flop on my feet, or jump up on my lap, I do. When I find an unexpected note from my hubby.
I feel grateful for cooler days and north winds and for the ac in the bedroom.
I remember reading somewhere that depression is anger turned inwards. That would explain a lot. Justified or not, whatever the reason. Feelings of helplessness turn to anger, and then because we are taught that’s socially unacceptable, gets turned on the self instead.
I strongly suspect chronic fatigue is part of that setup too.
Besides my indigo anger, frustration with being so damned observant and impotent to do something about it, from back to all that happened during the school years and even before. Being an adult trapped in a childs body. Unheard, unlistened to.
A friend brought me back some from abroad.
I can breath again. There is a glimmer of hope once more. Life is looking possible again, perhaps it might be worth sticking it out for a bit longer, one never knows, something nice could come my way. There might be a reason for living floating around somewhere even if I haven’t yet pinpointed it.
I’ll leave you with a final quote, suggesting what you can do to help someone dealing with what we call a chronic condition.
“So what do you do? You listen. You ask non-accusatory questions and listen. You engage and you listen some more. You don’t judge; just listen By the very act of being there, you start to change the dynamic. You can’t fix that person, you can’t chid or bully them into feeling better, or joke them into it, or anything else, but listen. And in that listening, maybe something will occur and maybe the person you’re listening to will hear something they are saying and realize they need to make a change, and then something good will happen.”
Two good easy to read articles about depression:
This is… too relate-able.
Sorry about the late response; thank you for reading and commenting, it makes me feel less alone in this.