You’re probably not going to believe this since I’m posting this on a blog largely about my sex life, but I’m a pretty private person—at least about certain things—and what my experience as a chronically ill person is definitely one of those things.
Sure, I’ve written a bit about it in the past, and I stressed out over whether or not to post even that…and it was mostly a scientific explanation. The science behind Indolent Systemic Mastocytosis (ISM) is complicated AF—it’s the strangest disease you’ve never heard of—but even explaining the science behind it seems easier than talking about my personal feelings about what it’s like to live with it.
It’s kind of a conundrum, right? I’m an educator and an advocate, so I’m torn between wanting to share my experiences and educate people….and being terrified that if I do that I’ll scare people off, that it will sound like I’m complaining, or that no one will want to hear what I have to say. While most of these concerns are the product of my anxiety, they’re also based in reality. Most people living with a chronic illness can tell you that people’s empathy, understanding, and patience has a limited lifespan. Living with chronic illness isn’t a short story, it’s a never-ending saga, except it has no action, no climax (well, hopefully, it has more than a few climaxes, but you know what I mean), and no conclusion—so eventually everyone gets bored with it. Even family members have told me they don’t want to hear about it anymore.
So I talk my chronic illness from a scientific or educational perspective, or when feel I can offer something useful to people dealing with similar problems. If I have to talk seriously about my health I make sure to punctuate it with a half-assed joke about how my medical problems are just part of my charm (they are). Unfortunately, like most people with a chronic illness (because no matter what condition you have, we often run into a lot of the same situations) I run into more problems than I’ll ever figure out how to solve, and my overwhelmed, at-my-wits-end style rambling—the state that I exist in when my symptoms start taking over my life—isn’t pretty. It also doesn’t make for writing good articles.
If I’ve learned anything from having a blog for the last few years, it’s that no matter what I’m feeling or experiencing, there’s someone else out there going through the same thing. Probably multiple someones. So I’m going to try something I find really terrifying—being vulnerable on the internet. No happy ending, morals, or solid educational content guaranteed.
Being chronically ill sucks, I’m struggling right now, and I most definitely do not have my shit together.
Phew. I said it. That wasn’t so bad.
I left a job I hated last September with a boss who treated me terribly, made it clear she thought I was making up my chronic illness and made sure to tell me how my perceived failures made everyone else’s jobs harder. I told everyone I was leaving my job because of my boss—and that was a big part of it—but the truth was my ISM had begun to make it nearly impossible to keep up at work.
I tried so hard. I
spent spend a lot of my effort criticizing myself for things I can’t control, like being chronically ill, because it feels like something I SHOULD be able to control. It’s my body after all, right? So I’d cry on my drive home from work, and by the time I got home I’d come to the decision that the next day would be better; that I would do better or try harder, and that’s all it would take to fix the problem.
Spoiler alert: it didn’t.
I did that most days for almost a year and the only thing it accomplished was me feeling like a failure almost every day. Turns out trying harder doesn’t get chronic illness to cooperate (but it does stress you out and sometimes make it worse).
The problem is when you grow up believing that you can do anything you put your mind to and you learn it’s not actually true is it makes it really easy to believe you’re a failure, and that’s something I’ve felt a lot of since I started getting brain fog as a symptom.
Yes, there is something called brain fog, yes it’s a ridiculous name, and yes it’s very, very real. It also sucks. I first heard the term at a conference for patients with Mast Cell Diseases, and I while I wanted to give all these nice new people I was meeting the benefit of the doubt, I was pretty sure “brain fog” was a made up thing (I was wrong, it’s not). Since then I’ve heard it called or associated with other things, like Organic Brain Syndrome or Fibro-fog, Chemo-brain, etc. but I suspect for the most part we’re all experiencing the same awful thing.
Brain fog is hard to describe and given the made-up sounding name, it’s not surprising that there’s no agreed-upon medical definition or an ICD 10 code to identify it—despite the fact that it’s accepted by both patients and doctors to be a common symptom of many chronic illnesses. It can be caused by different things, vary in frequency and intensity, and the specifics of what each person experiences probably varies. It’s not uncommon either, people who live with Lupus, Lyme Disease, Rheumatoid Arthritis, Fibromyalgia, Systemic Mastocytosis, Chronic Fatigue Syndrome, and countless other conditions experience it. As someone with Indolent Systemic Mastocytosis, my brain fog is likely caused by certain chemicals released by mast cells that, in high levels, can cause brain inflammation. There are few treatments and finding what works for you is done through trial and error and often seems to only be a temporary fix.
You’re welcome to look it up, but the internet doesn’t have much to offer. Googling “brain fog” gets you far more “this diet will cure your brain fog!”-type articles than anything medically accurate—so I’ll just explain what it feels like to me.
The best way I can describe it would be to imagine you’re a stoned Alzheimer’s patient who has a head cold, anxiety, and ADHD. It feels as strange as it sounds, and it can, and frequently does, derail my entire life. Imagine trying to give a presentation at work, holding a conversation or being productive and running a business. Imagine never knowing when you’re going to feel like that and not being able to plan around it. It’s impossibly frustrating and overwhelming.
Brain fog has easily conquered every hack I’ve come up with to deal with life, especially when It comes to managing my ADHD. For years I actually convinced myself I didn’t even have ADHD (despite practically being the definition of ADHD) because I managed it pretty well, with some extra help from my meds. My brain fog has given my ADHD superpowers and has made it unmanageable.
Even living with it I find it mind-boggling to wrap my head around how much it impacts me. The contrast between days with and without brain fog couldn’t be more drastic. Without brain fog I can multitask, I can hold conversations with a dozen friends on multiple chat apps at once and remember where I left off (or to check the app at all), I can find my words and I can write them down, I can knock out a lengthy to-do list in a day. I feel like I can do whatever I set my mind to.
Days with brain fog feel empty. I feel like a shell of the person I am—my thoughts are jumbled, my body is hyper alert in the worst possible way, leaving me jumpy and anxious, and I suspect I might be moving in slow motion. Normal things, like washing my hair, take so much longer. Showers become an event I plan for rather than something I do before moving on to the rest of my day. It has become an accomplishment because I am not capable of accomplishing much else.
Brain fog seems to exist on a spectrum and there are days where the contrast isn’t always as stark, sometimes brain fog is subtle—you’d probably never notice I wasn’t feeling like myself, except I’ll probably forget things and play it off with a joke. Brain farts, amirite?
I hate those days the worst because I’m so close to feeling like myself, and I’m sure I’ll be able to push through the haze, but I can’t. It’s that scene in a movie where the car comes to a screeching halt moments before tumbling over the edge of the cliff and the characters realize there’s no way to the other side. Instead of giving myself permission to just manage what I can, I’ll expect to be able to be productive, only to find that even simple tasks feel insurmountable. Those are the days where I try to make decisions and end up in tears because I can’t make choices and I don’t really know why. I don’t know why I can’t accurately judge how long something will take, why easy things suddenly feel hard and hard things feel impossible, and why I can try to work all day and get absolutely nothing done.
Sometimes those days string together for weeks or even months, and there always comes a time where I wonder if maybe I’ve always been like this and if it’s going to be like this forever… and what the hell am I supposed to do if it is?
Here’s the thing though, if tomorrow all my symptoms went away, for good, I would still be dealing with the fallout of my experience as a chronically ill person for years. Being chronically ill is fucking traumatic. I hate using that word—traumatic—because when I think of that word I think of things that are so much more horrible then what I deal with. I don’t want to lessen what those people experience by using that word, but I don’t know of a word that fits what I feel as accurately. Maybe I just worry someone will tell me I’m being dramatic and don’t deserve to use that word. No one talks about how being ill can be profoundly traumatic, and it’s something we should be discussing.
Being chronically ill is a never-ending, ever-changing impossible obstacle course, but the way it changes how you see yourself and how you think others see you is probably the most challenging. I feel a lot of anxiety about sharing my opinions because I no longer feel I can trust myself to evaluate all the facts and draw a conclusion. I expect that I’m forgetting something vital, even when I’m not. I know if someone questions my opinions, I won’t be able to pull up all the facts that built that opinion to defend it and I’ll just wind up sitting there with my mouth hanging open trying to remember things my brain won’t access. So I’ve stopped sharing a lot of my thoughts.
The bigger the role my chronic illness plays in my life, the smaller I make myself.
I don’t want to take up less space, but I can’t seem to stop it. My inner critic has gotten louder, and the voice telling it to shut up has gotten quieter. I worry that people will think I talk about my chronic illness too much, but it makes me feel more comfortable if people’s expectations of me are realistic. I used to be able to push past things I get hung up on and anxious about now. I have a huge personality that’s always been one of my favorite things about myself, but I’ve lost the confidence to show it off.
Instead, I feel like a burden most of the time for having to inconvenience the people who want to spend time with me because some 95% of products we use every day have fragrance and anyone who spends time with me can’t use any of them in my presence. I worry that any wrong missteps will firmly tip them over the edge into “she’s not worth this effort” territory and I’ll have no one left.
Few people know what I’m up to on a day-to-day basis since leaving my full-time job. I’ve got a collection of side gigs (please excuse this shameless plug for my new Etsy shop) that I’m proud of, but that I make little to no money from. Turns out a lot of my self-worth was wrapped up in my ability to support myself. Not making any money leaves me feeling ashamed, and there are people in my extended family who don’t know I left my job months ago because I’m afraid of what judgy things they’ll say. I know they don’t believe I’m “sick enough” to warrant having trouble at work. And somehow, in all these feelings, I’ve realized that I’ve categorized being chronically ill, and everything that comes along with that, as a personal failure, even though I know it isn’t.
It took me a really long time to write this article; my feelings often feel too big to be squished down into words that inadequately express them. This isn’t a tale about how I’ve overcome my symptoms to become successful, or even how I figured out how to make things work for me. If anything, this entire experience has made me reevaluate what the hell success even is. I’d love to even tell you I’ll stop feeling frustrated and guilty for things I have no control over, no matter how hard I try—but that’s probably not true. I’m not there yet.
Most of my thoughts and feelings scare me. It’s so much easier to lock them down inside me and keep them to myself, and it’s terrifying to share them—which is exactly why I wrote this. Being chronically ill can be really hard and it can be especially lonely—so I want everyone else who is also struggling to know: you’re not alone. I’m here. I see you.