Chronic illness sucks.
A friend of mine pointed out that I hadn't posted in my blog for a while. I told him I hadn’t felt up to it, and described what my body had been going through lately. He said that topic in and of itself seems like a piece. I considered this but said, “I don’t have an angle aside from, ‘This sucks,’ so why would I write about it?”
I don’t want to depress people. Wouldn’t talking about nothing but how much my body sucks just be self-indulgent? Whining? Pouty?
But you know what, maybe this does need to be written about. I am struggling. Like, really struggling. I was raised to have a good work ethic. I got my first job at 16. Looking back at that job, I feel ashamed because I was fired. A perfectionist who insisted on getting the best grades and highest acheivements, I was scared to tell my parents. When I did, I remember my mom just repeating, “Oh my god I’ve never been fired.” She didn’t mean it as insensitive or ignoring my pain, she just couldn’t wrap her brain around it. So I have this kind of trauma response to the idea of being fired, more than just it sucking to get fired, but that the appropriate reaction is to be so shocked you veer right into denial.
And shame. So much shame.
I had missed a mandatory meeting. It was very early in the morning, before the sandwich shop opened and I had of course set an alarm but I slept through it. Today, I am able to say I have insomnia. My dad has it, my siblings have it and most of the relatives on my dad’s side of the family struggle with it to some degree or another. I know when I bring this up, most people follow it up with their experiences struggling to sleep at times. I have learned to listen politely. They want to commiserate. They don’t want to hear about how bad my condition is. So. I put on a sympathetic expression and nod.
I also have a panic disorder. And, again, when I say this a lot of people respond with their own experiences with anxiety, some more significant than others. Again, they don’t want to hear about my actual experiences. They want to say they’ve also felt anxiety, acknowledge that it’s uncomfortable, and move on to another topic.
My ex-husband was the first person to insist I see a doctor. I think he was the first person to really think there might be something serious to treat. My parents, siblings, friends etc. saw the symptoms in small doses. Irritability, to be blamed on me being an unkind person. Nervousness, to be blamed on me being weak. Perfectionism, alternatively, viewed as me being a “hard worker,” or “smart.” But these were all symptoms. I lit up the questionnaire for disordered anxiety like a Christmas tree.
The doctor looked at the form, nodded, knowing my diagnosis already, and asked what brought me in today. I described, what I know now as, a panic attack. He nodded, again not surprised as my presentation was absolutely text book. He asked how often I had these attacks.
“Probably...ten times a day,” I said.
The doctor showed surprise for the first time. He reiterated the definition of a panic attack, asked me to really think about it, and asked me to now tell him how often I had one.
“Yes, right, that’s what I said, probably ten times a day. Is that not normal?”
His jaw went slack, pity clouded his eyes, and he said, “No. It’s not. It’s not typical for even people with severe panic disorders to have that many full blown attacks a day. How long has this been going on?”
I said as long as I can remember I’ve had the attacks, but it’s gotten worse since high school. I distinctly remember him saying he wasn’t sure how I was alive. So that was fun.
He reluctantly handed me the form for depression and I checked none of it. I had been dealing with the most severe form of a panic disorder this physician had ever seen and I still had no signs of depression; I now know that is also uncommon. His confusion increased.
Then this poor man asked how my sleep was. I just laughed.
“I don’t really sleep.”
“Ok, I’m sure it feels like that sometimes but how many hours a night?”
“I’m not sure. Probably two.”
“No, per night total I mean.”
“Right. Two hours most nights. Most good nights.”
He just stared at me.
The treatment plan involved triaging my attacks while trying to knock me out at night. During a check up, after increasingly higher doses of melatonin, another doctor told me she thought my body, “Simply doesn’t produce melatonin, the thing that makes a brain fall asleep, on its own.” I now take 20 mgs a night, about four times more than most doctors recommend to most people, and that, along with militant sleep hygiene, gets me four, sometimes six, hours a night.
My sleep hygiene is this whole process. When I first moved in with my current partner it drove him nuts. If I have to be up at 6am, I’m in bed no later than 9 which means dinner around 6 like an octogenarian. Lights dimmed about two hours before bed. Voices down about an hour before. Minimize blue light, make sure the bed is made. Meds twenty minutes before bed and once I’m in I’ve got earplugs or a white noise machine, total darkness, a sleep mask and no interruptions whatsoever. Oh, you wanted to fool around? Sorry dude you missed your chance by like five hours catch me tomorrow before 7pm.
After about four months of co-habitaton with Jim, I ran into a bad patch of insomnia. A few times a year, something will set it off and I’ll just lose the ability to sleep at all for a week or so.
I told him I wasn’t sleeping well and he made the noises people do. “Ah that sucks.”
He knew I had insomnia but he didn’t know know, you know?
When this happens I always try a few basics first. Make sure to take a good long run. Tire myself out, then extra careful sleep hygiene that night. If that doesn’t work, the next day I’ll have a few drinks, try to let the alcohol buzz lull me to sleep. Maybe extra meds the next day, double up the melatonin with nyquil.
By the fourth day I’ll try anything.
I took a half day at work; my brain wasn’t functioning anyway. I came home, changed into workout clothes and tore apart the yard. I worked for hours in the sun, trying to exhaust my body into literally passing out. I brought a bottle of wine into the yard and drank the entire thing in the heat. Jim came home to find me covered in dirt, drunk, completely out of my mind with sleep deprivation, and wide awake but sobbing.
I don’t remember the whole evening but I do remember him putting me to bed, like a toddler. I continued to sob and at some point I told him to stop treating me like a child and he said he would, then tucked me into a little blanket burrito and stayed with me until I slept. I stayed asleep for twelve hours that night.
He no longer complains about my obsessive sleep hygiene. He silently runs to the store and replaces the nyquil bottle when I finish it and constantly asks me if I need a nap. Now, if I say I have insomnia around someone new and they try to give me the, “I know how that goes,” speech, he looks at them with the weary eyes of the soldier from the trenches and tells them they know not what they speak of.
The panic disorder is more treatable. Medical professionals try to prescribe meds at the “lowest effective dose.” Basically, all medications, including those used for panic attacks, have side effects. You and your doctor try to work to find a balance of medications and lifestyle habits that allow your symptoms to go down while not allowing side effects to take over your life. What this looks like for me is moderate doses of medication combined with meditation/journalling/boundary setting, etc. to get my attacks down to about one a week. This is still shitty but a marked improvement. I always have the background buzz of underlying anxiety, but I manage it. It’s hard, but doable.
During the middle of the pandemic, I started to get increasingly unbearable nausea. I was not working, for pandemic reasons, so I just tried to “tough it out.” After about six weeks of on-and-off feeling like I was going to vomit, then three consecutive days of not being able to eat at all, I was again convinced to see a doctor by my partner.
It turns out it was Type 2 Diabetes, which made sense; my grandmothers both had it, my mom has it and my sister does. The nausea had been from consistently high blood sugars. The thing is though, the meds to treat Type 2 Diabetes? Also cause nausea “for a few months until your body gets used to it.”
So anyway between the diagnosis and scheduling tests and appointments and med changes I’ve basically been nauseated every day or every few days for six months.
I cry a lot. It’s been awful.
And then I’ll even feel just fine in the moment then I’ll try to eat a food that I ate three months ago when I was nauseated and just the memory of that nausea will make me nauseous again.
Are you tired of reading the word nausea? Cuz I’m fucking tired of being it. It’s been SIX MONTHS.
And here’s the thing. I’m very blessed. Privileged even. I’m white. I’m educated. I have a loving family that will always be a safety net if needed. A dear friend of mine is a talented pharmacist, always willing to answer medical questions for me any time of the day. My best friend is a brilliant dietician, a veritable font of knowledge for how to manage the diabetes. My partner is kind and hardworking, patient and always willing to take care of me. I’m a very fucking lucky person.
And I’m terrified.
I haven’t been working for a year. I’ve been trying to write, when I feel well, but I’ve been completely able to nap or sit on the toilet for an hour (yep that’s happened- it’s hot as hell) when I need to.
But when I was working 9-5 I had to compensate for my two chronic conditions, taking time off to sleep or half a day when I forgot my meds, dealing with the terrible immune system that comes with the constant fight to sleep and recover from panic attacks, not to mention fitting in regular doctor appointments, which often have to be during a weekday, for all these things. And I did a pretty good job. I communicated with really great managers about all this and had so much support. But it was also really hard.
Now, when I go back to work (pandemic unemployment programs are currently set to expire in September) I will be contending with all old problems and also side effects from diabetes medications/future complications from the condition and the stress of managing food and exercise.
Thinking about how complex employment can be while managing chronic illness(es) led to, of course, a fucking panic attack for me. And I realized you know what, I should be talking about this. I should be vocally addressing how much this sucks. Because chronic illnesses are so misunderstood. And I’m one of the lucky ones. My conditions aren’t directly life threatening. They don’t involve a lot of pain. I have so much support.
But people without health conditions typically downplay chronic illnesses or act like they understand what you go through. When working outside of the home, even the best managers can only support people within the confines of the HR rules for time off and accommodations. And even just getting an accommodation means the person using it has to deal with the stigma and judgment of seeking the support in the first place.
In the U.S., programs to support people who are unable to be employed are half-assed, at best. And employment in the post-Industrial age is a full forty hours or absolute shit pay with no benefits. And this doesn’t even touch on the expectations of parents, especially mothers, to be perfect involved, present, patient parents at all times no matter how they feel or what they’re dealing with.
And don’t get me started on addiction/overdose problems stemming from the self-medication of symptoms of chronic illnesses and the criminalization of drug use and subsequent flaws in the penal treatment of addicts in the United States. (I mean I probably will get started on that, just in a different article.)
There are statistics and facts that can make concrete points about all of these topics but what I’m here to say today is just: this sucks.
Emotionally, I am drained. I am sick of being sick. And it sucks.
And I know there are others who feel the same way. People with conditions like mine, or more serious mental health conditions like depression with suicidal ideation, or schizophrenia. People with life-threatening illnesses like cystic fibrosis and multiple sclerosis. People with polycystic ovary syndrome, cancer and heart failure. Some of these conditions are so much worse than anything I’ve ever experienced. And if my situation sucks, theirs’ definitely suck.
This article has no proposed solution. I have no political agenda or call to activism. I’m just here to say this sucks.
People with chronic illnesses, I see you. I hear you.
And it sucks.
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