Unrest is a documentary on Netflix that came out in 2017. I heard someone mention it and it reminded me that I had wanted to watch that. So I decided to yesterday. The documentary is on ME/CFS and is pretty much about those very severe cases of ME/CFS where people end up basically living in their beds and bedrooms due to the intensity of their condition.
Brea was a Ph.D. student at Harvard University and a soon-to-be bride when an unexplainable disease left her bedridden and struggling even to make use of a wheelchair. Called Unrest, her film captures that difficulty of diagnosis and care for both patient and caregiver while exposing prevalent stigmas around what is often “invisible,” misunderstood, and largely incurable. Told what so many people with chronic illness initially hear—that it is “all in her head”—Brea finds strength in self-advocacy and community; video-chatting with others with ME/CFS from her home, she tries to come to terms with a life she had never anticipated.Vogue
It is a familiar story in an unfamiliar landscape
I don’t have ME/CFS. I have fibromyalgia which sometimes is considered the other side of the same coin in research, or once was. I certainly don’t have a condition that confines me to my bed. Although I’m very familiar with a lot of limitations to my desires, goals, ambitions, plans, movements and actions.
I think this documentary is a must-watch. I’m glad they kept it on Netflix so that I could watch it. It gives people a look into severe ME/CFS behind closed doors. And that is never what the general public sees. They never see severe chronic illness. And they never see us at our worst at home when we are absolutely unable to function. So all their doubts, snide comments, and ridicule for invisible illnesses are so easy to fling out when you only see us when we are trying our best to put on a facade of well-being in front of them in order to semi-function. Never when we cannot function.
What I found all too relatable
But literally, every woman diagnosed with a condition that is hard to pin down can relate to her journey and what she talks about in Unrest. It is relatable in that aspect. This idea that we have to be careful how we act and what we say because we know we are being judged by doctors. We know or have even been told it is all in our heads. Some of us finding out years and years later… nope, wasn’t. I remember a time not so long ago that fibromyalgia wasn’t believed by a lot of doctors.
So, yeah, I was diagnosed back in the day with fibro. But I wasn’t treated. And if I said I had it some doctors would completely discount me or would say they didn’t believe it existed or would say I was stressed or depressed. And nothing pisses me off more than someone telling Me what My mental state is because they can’t believe my Physical state. Anyway, you just get no treatment because you get tired of having to prove things. And perhaps that is what led to worsening health and more comorbid conditions and chronic migraines. Who knows? Maybe early, proper treatment might have been a good idea. Don’t look at me. I wasn’t the specialist that said ‘I was too young to be treated’ or the doctor who said ‘Fibromyalgia doesn’t exist’ or the one that said I must be ‘depressed’ because I was, after all, a woman.
It is no wonder that most of us turn to alternative treatments. Many of us have been let down by the medical community immensely for decades. But also over time many of us have realized there is much more to pain management than the medications offered to us anyway. That the mind and body are very closely bonded. And we need to look at our overall well-being. So maybe doctors and society never had our back but we persevered regardless. And times have changed, slightly, and so there is some progress.
This documentary looks at a whole segment of the ME/CFS community that really was disregarded and left behind by everyone for a long time.
My personal take with a weird medical example
“If you say too little, they can’t help you, and if you say too much, they think you’re a kind of mental patient.”Unrest
And this quote at the beginning of the documentary by Brea’s husband hit me hard. There is a lot of truth there. A painful truth really.
It is sort of an art form really when you are a woman with a chronic illness or chronic pain. How not to say too little as to have them completely ignore you but not to say too much as to have them think you are nuts/exaggerating/a hypochondriac/clearly it must be in your head or psychological/or you must just be depressed or anxious or Both.
It concerns me how a lot of things get missed this way. My most recent concern is that back in 2012 I had these incidents that basically were nocturnal seizures. I was aware during them and they were short in duration but I sure as hell had never had anything like that before. So after having about four or so of them I went to my doctor.
He was a bit of a twit. Or… perhaps completely disinterested would be a better term for his whole treatment process for chronically ill patients. He had completely brushed off my nerve damage in my hands such that I had to wait a year to see my neurologist to even figure out what May have happened there. Since he never did any tests I have no idea what caused that peripheral neuropathy. Anyone’s guess.
For these nocturnal events, I don’t think he entirely believed me. He asked if I had sleep paralysis. I do. Frequently. I am very sleep-deprived and so get a whole lot of that sort of thing. As such, I know exactly what that is all about and what it is Not. And this was Not That. Too short in duration. The same every time. Literally, the onset of these ‘attacks’ seemed to occur with the same sort of process so I knew when one was coming on. And they had the same sort of symptoms when they did. Anyway, he brushed them off saying seizures occur for many reasons and these likely occurred because I was sleep-deprived. No tests. No follow-up. Nada.
Fast forward a bit. I had an ‘incident’ that caused a drop attack where I completely lost muscle control, dropped to the ground, and my muscles sort of flopped around. But I was conscious. I thought it was a blood pressure issue or a medication side effect. So I went off the medication I thought was to blame. Never realizing at that time seizures can present that way. I don’t even know if it was. I don’t know enough about them to even know. All I do know, is that I did nothing about it because why bother? It didn’t seem that concerning at the time considering I was fine after, mostly. Also no one was home to see it. I see no point in speculating what that was and unless I had a signed witness report no way in hell I would bring up any such thing with a doctor again. Not after being completely discounted before.
So, Now, when a doc recently asked me if I ever had any seizures I sort of said nothing. Because back then that doctor Did Nothing. What the hell am I supposed to say that Doesn’t Sound Insane? “I think so” “Maybe?” “I have no idea” “It’s in the realm of the possible but my dumbass doctor didn’t do anything to confirm or deny it?”
So is that important? Will it be in the future?
And I wonder if that could actually be detrimental in regards to my current situation. Or not. I have no idea. That is the point. I know that I asked for a sleep study recently because I had incidences during falling asleep that were ‘peculiar’ and I didn’t know what they meant. And I know that I have had some vertigo falls that are not ‘typical’ for my type of vertigo. I wonder if maybe that past history with whatever was going on in 2012 might actually be important. I wouldn’t know or begin to guess if it would be.
I personally don’t think so. I think those seizures were sleep deprivation-related and maybe higher risk due to my migraine disease- I have had Alice In Wonderland Syndrome aura events from lack of sleep. So that’s likely it. The point is… I am not the one that should be making such determinations at all. I have like these gaps in my medical history where doctors lump things in with fibromyalgia or migraine disease or brush it off altogether with no follow-up or tests. I can’t be expected to remember them. I can’t be expected to know what is important information or not. And without any evidence… frankly, they don’t actually officially even exist.
No evidence, no tests… no problemo
And that is exactly the problem with the whole thing. Often. If I mention something, obviously too much, and I am not taken seriously and they do nothing about it… if it then becomes something important later what the hell am I supposed to say? I have no record of tests, no one looked into it and nothing was done. If I say nothing or too little about it… same thing.
And in these incidences, you sort of have to hope whatever that was that occurred was an isolated incidence and meant nothing. If it meant something… well, who the hell knows when or if anyone is going to figure it out.
Things like that history. Like my nerve damage that I was eventually told I have but never had a test for. And numerous other things that were ignored or I was just told I had without a test or shoved under the umbrella of fibro or migraines without a thought… it gets tiresome. So yeah, I tend not to even mention minor things. Or things that go away on their own after a while. Or things that I just do not deem important enough… because I know if I don’t, they sure as hell won’t. I ‘don’t like to make a fuss’ because they have taught me that not much of what I say is that important really.
Gaslighting by doctors can have serious consequences. You doubt what is important. You feel like nothing is important enough to mention often. Maybe it is important. I always think to myself if it is… I’ll find that out the hard way.
Back in the day with fibro
But being gaslit by doctors goes back a long way when you have a medical condition like fibromyalgia. And I assume ME/CFS. Like those in the documentary, for me, the process of being diagnosed was a very long one. And I was a child. It is a hard process to go through as a kid being undiagnosed for a long time and feeling this sense that maybe nothing is wrong with you but Wrong With YOU. And I had a damn good childhood doctor.
However, once I finally was diagnosed way later at the age of 20 it was downhill from there. Lack of treatment. Outright denial that FM exists by doctors. Doctors told me that I was just depressed and Not in pain… pretty sure it was the pain making me a bit moody actually. Just saying. No treatment so trying all sorts of things myself and trying all sorts of ways to cope myself so I could finish university. But then compounding pain when migraines jumped on board and then became chronic. At least doctors believe in those and try to treat those. That was something.
It all gets better over time, with age, perseverance and endurance. Learned coping skills. I learned all my skills the hard way. And will continue to pick up more as I go along. Every little bit counts. But in the beginning, it is hard to know where to start for sure. I didn’t know how to pace myself. I kept trying to keep up with my peers… I couldn’t, of course. I always try actually and I never can. I have finally learned that lesson, thankfully.
I feel for the women in this documentary. I understand how we are treated in the medical community. I have been there. I know what it is like to lose a lot of functionality in my life. I have experienced this a few times when the pain got much worse and then when this dizziness/vertigo got severe. You lose a lot of who you can be… how you can move in the world. How you can be in the world. Manifest in the world.
It is insanely frustrating because you can’t push through it. You can’t fight it. It is a wall. And that makes you sad. I found a way to do extreme pacing, I call it, to get as much functionality out of my day as possible as long as I rested as much as possible as well. And that seems like so very little but for now, enough. I know these women feel the loss acutely. I know an insane amount of fatigue but I do not know the heaviness and constant level that disables them. I do not know their illness or lives or journey. But at the same time, we all know this familiar road. We all have touched on some of those same struggles. With a diagnosis, with doctors, with treatment, with stigma…
ME/CFS much like fibromyalgia has degrees of disability. Some people can live and function such that although they have struggles and limitations you would never know they have it. Some of us really struggle to push through but most people would never know that. Others are completely disabled by it. It is invisible. It can’t be seen. So it can be doubted. And, man, can it be doubted.
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