I was recently told by someone whom I considered a good friend that I have a “daily sob story.” As we parted company, he said he won’t miss it and used a colorful term to paint me as one who cries hysterically at the smallest thing. I wish I could say that I was able to brush it aside as I do many other bombs that are lobbed at me with some regularity, but I haven’t. It hit my soft underbelly. Like many people living with chronic illness, diagnoses don’t stop with the “big one.” Systemic issues reveal themselves, sometimes through drug interactions, sometimes through the stabilization of primary symptoms that allow secondary ones to manifest more clearly. Sometimes a fresh hell is asymptomatic and is simply an unpleasant surprise.
Let me start out by saying that there are millions of people who have more complicated diagnoses, who do not have access to the same quality care, who do not have supportive family, friends, and colleagues, or the ability to advocate on their own behalf. Frankly, it is sad that we’ve turned illness into a competition in which we have to qualify or defend our own realities lest we seem like we’re complainers looking for attention. That was essentially the accusation levied at me, one made a few months ago that still hurts enough that I am writing about it now, less than twenty-four hours after a new diagnosis.
For those who may not know, here’s my deal. I was diagnosed with Bipolar Disorder three years ago. I had been self-medicating with alcohol for years, which I continued to drink through the first year of my diagnosis. The initial mood stabilizer I was on, Geodon, caused me to have a nervous breakdown and I contracted viral conjunctivitis, a rare side effect, which did not do much to improve my mental state. I had to resign from a job that helped me pay for insurance. During this time, I gained 20lbs. I then switched to Lithium, which has been great at stabilizing my mood, but in three years I have gained 50lbs. I’m on three other medications to help manage my bipolar depression and General Anxiety Disorder.
My exhaustion level for the past few years has been pretty much beyond description. I’ve battled insomnia most of my life; natural and over-the-counter remedies do not work for me, and because of my weight I snore like all three stooges. I had two sleep studies late last year (just in time for the charges to be applied to the 2017 deductible, charges we’ll be paying off through 2020) that revealed I stop breathing 133x/hour. Diagnosis: severe sleep apnea. The CPAP machine is amazing and I use it religiously, but my exhaustion still remains. I take a sleeping pill with a dosage that made the nurse at my doctor’s office say, “Wow.”
Since I was a child, I have had problems with my ears. I was told that I would most likely lose my hearing around the age of 60; granted, this was in the early 80s and we have amazing treatments and hearing aids now. With that said, I have severe tinnitus, hyperacuity, and I need to have tubes put in every year (my hearing is declining rapidly, but the tubes should restore about 25%). There’s other stuff: I have become hypertensive. I have edema problems. Psoriasis. I just received a new diagnosis (see below). I am currently on ten medications.
Here’s the deal: I know that there are a lot of people who deal with many of these conditions individually or in combination. Some may deal with them all. I don’t believe I am special and I’m not asking for pity. I just want to make that clear, although I doubt it will stop the jackasses from making jackass comments.
When someone has the courage to speak up and say, “I’ve got some shit wrong with me and I’m not doing so well today,” I think the decent thing to do is not to belittle that person for being sick. Granted, my primary illness is a mental one. I see a therapist every week and I spend a lot of time trying to work through my paranoia and defensiveness, but it is fucking devastating to be ridiculed for sharing one’s struggles.
Chances are, there is someone in your life who is sick, broke, and tired. The energy it takes me to call the insurance company to appeal a decision is legion, and I ain’t got many. From the moment I wake up, I am thinking about how to time my meds, my meals, my water intake, how to manage if certain symptoms arise, feeling guilt and shame that I am unable to do the things I promised I could do because, well, because I’m sick, broke, and tired.
This week I began two new meds. The first is a new mood stabilizer that is weight negative that we hope will be able to replace Lithium, but that transition will be slow. The second is for my new diagnosis, a hypoactive thyroid. This could be the root problem of the weight gain, exhaustion, joint pain. Anybody who is on multiple medications knows that it is a bit of a roulette. This comes at a particularly bad time, as next week I am driving down to Winston-Salem for the mid-semester intensive for my doctoral program. I am terrified that I will not be able to make the drive in one go—I once had to stop overnight in Columbus on a trip to Cleveland—or that I will have dizziness, fatigue, confusion, etc. while I am there. Yet, if I miss the event, I have to repeat the semester, which simply is not an option.
I write this in hopes that at least one person will stop and think before they say something nasty to a person who deals with chronic illness. Stress is a killer. Feeling guilt and shame for simply stating facts about your life is bullshit. If nothing else, if I can’t reach the jackasses doing their jackassery, perhaps I can reach others who want to ven but feel they can’t: own your truth, you’re not alone, and I’m here whenever you want to kvetch.