It’s Bell Let’s Talk Day.
So let’s talk.
As blog/Twitter followers are aware, I got seriously sick last year (and I’m in remission, but still recovering). Sicker, physically, than I have ever been in my life–the last time I was so ill I had to see a doctor was when I had pneumonia in middle school.
This is a (very) lengthy, (very) personal post about what exactly happened to me that summer.
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It started around the middle of May. By July I’d lost around twenty pounds because food made me ill and my persistent cough had gotten so bad I was gagging and throwing up from it. I had to basically be forced and threatened to call the doctor’s office, but understand, again, I have never been sick with anything I couldn’t fight off. I kept thinking it would go away.
I had only met my doctor once a year earlier for a meet and greet plus I wanted some basic bloodwork. Getting in to see one’s doctor can be a bit of a feat here, so I was referred to a nurse practitioner (NP).
I was terrified.
Terrified of doctors/hospitals/illness/etc. I had a bad experience with mine as a kid prescribing me a medication she knew I was allergic to. I had bad experiences every time I needed bloodwork. My history with medical professionals involved no one listening to me. Plus I am naturally distrustful of anyone in any kind of authority position. I also strongly dislike using the phone, so even calling for an appointment stressed me out.
So when I say “terrified”, understand I mean paralyzing anxiety.
Prior to the appointment, I didn’t sleep. At all. It was in the afternoon, and since food was making me sick, I also didn’t eat.
So I showed up and had to change into a gown so the NP could listen to my lungs, which just adds a whole other layer of vulnerability to the experience on top of being sleep-deprived, starving, and terrified. We talked about some of my symptoms, what was going on at the time I got sick, and she said I probably had a virus I’d fought off but picked up cough-variant asthma, and she gave me a combo inhaler with instructions to come back in a week for a follow-up.
She also noted the psych referral request in my file and asked about it. I explained that I was undiagosed bipolar and before my doctor would discuss medication with me (I basically just wanted something for emergencies), he wanted something formal from a psychiatrist. That was a year ago and no referral ever came, so she said she’d look into it.
I was feeling pretty good about this, after the appointment. It wasn’t so bad, I thought! The inhaler started to work on my cough and I felt much better. My aunt, a nurse, raised the question of why this NP wouldn’t have ordered a chest x-ray and bloodwork right off the bat, but I was pleased that the inhaler worked.
Within a few days, I’d developed debilitating muscle/joint pain, however.
And by “debilitating”, I mean I couldn’t walk.
Remember, I’m a runner, and have been for years. I’m also stubborn as fuck and hate taking medication. I’ve dealt with twisted ankles, banged up knees, hip bursitis, etc. When I’m injured or sore, I…just keep going. So when I say I started waking up every morning with pain in every muscle and joint so severe it took me ten minutes to actually get on my feet out of bed, I am not exaggerating or being a baby about it.
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The follow-up appointment rolled around. My anxiety, again, went through the roof. On the ride there, I kept trying to explain to my mother why I found it so terrifying, and I finally said to her: “I’m afraid that I’ll be told everything’s in my head.”
This is something I think people with mental illness, particularly ones that mess with your judgement sometimes like bipolar disorder and schizophrenia, likely understand, and especially if you’ve ever been around people who are manipulative and experienced gaslighting. It’s hard sometimes to trust yourself and there’s an inherent fear that speaking up and confiding in someone will lead to you being told you’re just crazy.
So anyway, here I am once again in the doctor’s office, starving and tired and so anxious I’m almost in tears. The NP is late coming in, finally gets there and asks how things are. I explain the inhaler took care of about 80% of the cough, and she thought I could taper off of it, but finally ordered a chest x-ray just in case. Then I explained about the pain and how I was unable to eat/still losing weight.
She dropped eye contact with me, sat down, looked at my file again and asked if the psych referral had come yet.
*blink*
Me: Well, no, though that’s kind of a concern as well. I’ve been too sick to work much, in so much pain now too that I can barely sit at the computer, and not working = no money = I can’t pay rent/buy food, and that’s stressing me out/making me depressed.
And then she started talking about me taking antidepressants.
I argued, vehemently, saying I wasn’t interested, and, um, HAI, I’m losing this weight–
She said I’m losing weight because I’m too depressed and tired to cook meals.
*blink*
(No, I was too tired to cook ELABORATE VEGAN MEALS; I was capable of zapping a frozen entree in the microwave, which I’d been doing.)
I brought up the debilitating physical pain I was in, pointing out I could barely fucking walk and had to pop ibuprofen, which I *never* do.
She said, and I quote, “Depressed people feel more pain.”
*blink*
Never, ever, in twenty years of serious depression and suicidal thoughts has my illness *ever* presented with physical pain. But she wouldn’t listen to that. She kept talking about antidepressants.
I said I was bipolar and putting me on antidepressants without a mood stabilizer was dangerous.
She said she’d “feel comfortable” putting me on a low dose without a. a stabilizer, or b. a formal diagnosis. And she could put in the paperwork to get them free, since I don’t have a drug plan. And she was putting in a referral for a social worker, as they work with the mental health department.
I was in tears at this point. There was this…odd, spinny sort of feeling in my head, like I could literally feel myself spiraling, and the floor tilted, and I just thought: I am crazy. Here was this medical professional telling me, This sickness is all in your head. You are crazy. I am not going to listen to you. I know better than you.
So I just nodded, said whatever. She reluctantly agreed to order basic bloodwork but said there was no hurry and made it clear she didn’t think anything would come of it.
Then she smiled kindly at me and said, “We’re going to get you well again.” And left the room.
We’re going to get you well again.
I got my x-ray and bloodwork reqs, dressed. Stumbled out (almost literally, because pain + physical weakness because I couldn’t eat) of the office and into the waiting room in a daze, where my mum was. I almost didn’t bother submitting the requisitions but I knew if I didn’t, Mum (and friends DINA and DANNI, yes, you’re both responsible here) would yell at me and make me go back again.
I got into the elevator with Mum and finally broke down sobbing, “I’m just crazy. It’s all in my head, I’m crazy.”
*
Even writing this now, several months later, knowing the entire time I was fucking RIGHT that I was sick…I have this fluttering in my stomach recalling all this. I can feel that spinny, spiraling sensation again, where everything concrete in my head that I was so certain of just seemed to be crumbling.
*
If I didn’t have my mother insisting I wasn’t crazy, I wouldn’t have gone through with the bloodwork–I would have just gone home and continued getting sicker. That bloodwork showed an elevated sed rate–inflammation in the body–which led to my own doctor insisting on follow-up bloodwork, and slowly got the ball rolling that eventually led to a diagnosis…almost four months after the initial appointment with the NP.
If I had accepted I was just crazy, I would have just gone home and never gone to the doctor again and continued getting so sick with this autoimmune thing that I likely wouldn’t have gotten help until I required an emergency room visit.
If I had gone on the antidepressants she’d insisted on, god knows how those side effects would have masked or affected the symptoms of my disease and made it that much harder to diagnose later. Also? Given how steroids knock me into mania, antidepressants likely would have as well, which is very fucking dangerous.
And speaking of–the inhaler she put me on? One of the possible side effects was EXTREME MUSCLE/JOINT PAIN. Which she should have known before giving it to me. And the ibuprofen I was taking for it? Seriously bad for the disease it turns out I have, and likely caused more damage to my body.
I was sick for much longer than I should have been, in part because I was passed off as a crazy person by the medical professional responsible for helping me. Possibly irreversible damage has been done to my body. Countless work hours were lost, which–all these months later–is STILL affecting me as I’m in a terrifyingly bad financial place.
All this occurred because of a psych referral request in my file; this woman assumed, then, that everything had to relate back to my mental health and wouldn’t listen to me.
I have no doubt in my mind that she meant well. That she seriously thought she was doing the best thing for me and invested in my well-being.
But even well-meaning healthcare professionals who are good at their jobs have their prejudices and blindspots, and can be seriously damaging for people like me.
This is mental illness stigma, folks.
This is what happens when you assume a mentally ill person can’t be trusted to know their own body.
This is what happens when healthcare practitioners don’t listen to mentally ill patients.
Mentally ill = crazy, and crazy people can’t be believed, right? Everything is in their heads? They are always out of touch with reality?
Isn’t this what we’re always told? Isn’t that why so many of us are afraid to see doctors in the first place, so we lack any experience needed to properly navigate healthcare?
*
As a result of this experience, I had to have a talk with my mother about my wishes should she ever be made a substitute decision maker for me, since this is now a very real fear of mine.
As a result of this experience, I have to think long and hard about whether I want to pursue a psych referral and formal diagnosis, because if merely having it in my file is enough for someone to completely disregard me when I have a serious health problem, it’s not worth it.
As a result of this experience, I am hesitant even bringing up my mental health concerns during doctor’s appointments (if I had, I might’ve been warned how badly prednisone would fuck with my moods).
As a result of this experience, I’ve had to re-learn to trust myself and stop living in fear that my brain is constantly lying to me even when my moods are stable.
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Navigating healthcare, trying to seek help, while encountering prejudice, misinformation, and stigma is daunting and dangerous. My example here is just one of many encountered by so many people dealing with mental illness. And I am fucking lucky that I had the support of friends and family; others don’t.
And they are at the mercy of decision-makers who insist “We’re going to get you well again” yet don’t even have a grasp on what’s wrong with you.
Yes, let’s talk about mental illness. Let’s talk and talk and never stop. Talk to friends and family, talk to healthcare professionals, talk to policy makers, talk to anyone who will fucking listen. Talk when it makes you uncomfortable. Talk when it’s scary. Talk because your life and well-being depends on it.
Encountering stigma naturally stifles our voices, pushes us back into the dark, but the only way to change it is to keep talking back.
Perspective is a wonderful thing.
It’s fine, intellectually, to say “illness is illness” but in practice it’s a lot harder. You can call in sick to work because you have the flu, but a mental health crisis, even as a rarity, can mark you as something “different.” Something “other”. Unpredictable, possibly violent–it changes you in the minds of others. I can say, “I had to take three days off of work because I was sick in bed” but I can’t say, “I had to take three days off of work because my brain chemistry is fubar and I lost my fucking mind.” One will get you sympathy and well wishes; the other will guarantee you won’t be hired again.
okay right now. I’m exhausted but my thinking is fairly clear and mood is stable. I’m going to make dinner and lie in bed with the cats some more. 
I treaded water, contemplating this for twenty to thirty minutes, little by little creeping farther in the water, my gaze locked on the shoreline well across the lake, which I knew I’d never reach.
Writer of urban fantasy, thrillers/mysteries, and horror.