What It Means to Live With a 'Cocktail' of Chronic Conditions
What do I wish people understood about my life?
Well, first of all, I wish they knew that when I say I’m sick it’s legit, as in it’s a fact. When I say that I live in a bungalow, there’s no room to question if it is indeed truly a bungalow, and so it should it be with sick. Moreover, like many others who manage chronic illness, I have a cocktail of diagnoses.
I have bipolar disorder, which is essentially invisible and at my discretion to disclose. I also have celiac disease, which is invisible and at my discretion to disclose (something I do regularly for my own safety). I also struggle with complications from going 15 years without a celiac diagnosis, one of which is small intenstinal bacterial overgrowth (SIBO), and it too is invisible and at my discretion to disclose. Finally, I have polycystic ovary syndrome (PCOS), which is mostly invisible — I say mostly because it does give me a pretty impressive goatee, but few people would recognize this as an indication that my body is filled with cysts — and of course, it’s at my discretion to disclose.
In case you’re wondering, that paragraph was as painful to write as it must be to read, but I hope it helps you understand why I’m reluctant to mention the space that sickness occupies in my life. It’s impossible to understand how I feel without knowing the full range of dysfunction happening in my body/mind, and more importantly, there’s no understanding without appreciating the degree to which these illnesses impact each other. Getting glutened doesn’t just put me in the washroom, give me migraines, inflame my joints and leave my body feeling drugged by exhaustion, it can send me into a state of depression that will last for months. The inflammation in my gut affects my body’s ability to absorb nutrients and that affects my hormones. Cue the PCOS beard and mood swings.
Because none of the particular components of my “cocktail” are visible, I bear the responsibility for helping others understand what I’m going through. Sometimes I do a better job of this than others, because sometimes the depression is winning, sometimes it’s the mania, sometimes it’s a migraine, and sometimes I’m just doubled up in pain because the bacteria in my guts hate me (thank you, SIBO). I’m really lucky if it’s only one thing at time.
It’s awful to admit, but sometimes it’s much easier to let people think the worst of me rather than describe what it means to live with my cocktail. My struggle is exhausting, and explaining it to people who may or may not dismiss me as a whiner is just one more thing I don’t have energy to do. I realize people can’t help you if you never let them know you need it, but I also have enough experience with disclosure to know that it doesn’t always have a warm and fuzzy conclusion.
I’m just learning to connect the dots between my conditions, but thinking of my struggle as a cocktail helps because not everyone can understand how exponentially more powerful my symptoms become when they intersect, but most people can wrap their head around the power of a Long Island iced tea. And it’s a lot easier to tell people you live with the Long Island iced tea of chronic illnesses than to give the full inventory like I did above.
I could stop here, but there’s one more thing I wish people realized: knowing what’s in your cocktail is a privilege. We’ve all drank punch without knowing what’s in it, and that nastiness is what it’s like when you live with the symptoms of chronic illness without the benefit of a full diagnosis. I know a lot about this because for a long time I thought all the symptoms I experienced fell under the umbrella of bipolar disorder. I thought I had the single malt scotch of health problems and that I also just happened to be in possession of a bad stomach.
It can still be a cocktail, even if you have yet to discover the recipe. People can still be sick even if they don’t have a banner to hold up with their diagnosis. And if someone you know is chronically ill or living with symptoms of chronic illness but doesn’t talk about it, know the struggle is still real. They might be tired of feeling misunderstood, they may not have found a way to talk about it that doesn’t leave them feeling upset, and they may be scared to talk about what’s happening to their body/mind because they don’t have a name for it yet and they don’t want you to dismiss it as made up.
Even though I’m writing like a big bad advocate, my cocktail is something I discuss only with a small group of people. Many people are aware that I have one or more chronic illnesses, but I am guilty of letting people think that because I have a doctor and prescriptions I don’t struggle to keep it all under control. If there’s a lack of understanding about what it’s like to deal with my particular combination of illnesses, I’m complicit in that. Fighting to be understood by strangers, and even those in my immediate social circle, is rarely my top priority; fighting pain and my symptoms comes first. I deserve understanding as much the next person, but it’s also true that I don’t owe the world an explanation for why my life looks the way it does. The people who accept me don’t need all the reasons, and the people who don’t wouldn’t be persuaded by them anyway. That leaves a bunch of people in between, who simply didn’t know. Now you do.
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Thinkstock photo by Roxana Gonzalez