I’m a talker—I can talk to anyone, about anything, anytime… almost.
I find it ironic that it’s much easier for me to talk about my sex life than about what my life is like living with multiple chronic illnesses. I’m comfortable talking about it and I really enjoy talking to people and educating them about it. Once you’ve told someone you have a chronic illness (or several) though, it’s easy to sense their discomfort and the awkwardness that settles over the conversation. People think you’re looking for sympathy, that you’re complaining, or worse, that you’re asking for their medical opinion (“Have you ever tried yoga?” “You should go gluten free!” “You just need more sleep.“)
Although I’ve written a lot about having a chronic illness, I’ve been pretty vague about it. I think I was worried anything I wrote about being chronically ill would sound too “woe-is-me” (not at all my intention). Writing about my illness feels strangely personal, (I have no clue why—maybe because there are times I’ve felt judged for it), even though in my day-to-day life I talk about it all the time, but I realized how helpful it is to have a bit of context when I read other blogs, so here it goes: I have a rare disease called Indolent Systemic Mastocytosis (see why calling it Fred is so much easier?)
My Attempt At A Simplified Explanation:
Everyone has mast cells (MCs) all throughout their body; MCs help regulate your immune system and they’re responsible for allergic reactions. MCs also store a bunch of chemicals (like 200+) inside them, and they release these chemicals when your body is under attack from a virus or allergen. They also play a big role in inflammation and healing wounds. Researchers still have a lot to learn about mast cells, but it’s becoming clear that they play a role in allergies, autoimmune disorders, gastrointestinal disorders, migraines, and a surprising amount of other conditions.
Being diagnosed with systemic mastocytosis (Fred) means I have too many mast cells (MCs) and they don’t behave properly (I’m thinking we should send them to bed early without dessert. ) My mast cells think they’re being attacked by normal, everyday things (called triggers)—so I’m almost always having some sort of an allergic reaction. New things that trigger my MCs can develop out of nowhere and I’ll likely continue to react to that new trigger, creating an ever-growing list of things that can make me sick. It’s a bit of a grab bag, I don’t always have the same reaction to my triggers, and if I do react the severity and the symptoms that can result tend to vary.
It’s impossible to tell at any given time if I will react to a trigger (fragrances I almost always react to, but the others it’s pretty 50/50), or what symptom will result. My symptoms tend to evolve and change constantly and new symptoms also never really go away. For some not entirely clear reason, Fred also makes me predisposed to many other conditions, but I consider Fred to be my main medical issue since it reeks havoc on my life more than my other diagnoses.
To be clear, I’m not complaining— overall my life is pretty great and Fred isn’t life-threatening, but it’s quality of life affecting.
Side Note: It’s a complex disease. I strive to be very well educated about it, I am not a doctor. This explanation was intended to be a bit science-y, but primarily easy to understand. The links provided were my sources for my information, and I recommend checking them out if you’re looking to learn more! If you have any questions, ask—I’m happy to elaborate.
Umm…What does this have to do with being a sex blogger?
Shortly after starting Hedonish, a lot of my existing symptoms got more frequent and some new ones appeared, like vulva pain. Then my trusty sex drive suddenly vanished. I never realized how much my sex drive and my fascination with sexuality felt like part of who I was until it wasn’t there, and I’ve felt kind of lost without it. I love being a part of the sex-positive community, but Hedonish started to feel like a constant reminder of what I felt I’d lost and how awful I was feeling. The guilt of not being able to “deal” with Hedonish weighed on me constantly, especially since I had a few toys left unreviewed and emails I couldn’t bring myself to respond to. I was convinced that people would be as upset with me as I was with myself.
What made me come back to Hedonish? Sometimes you just need a friend to remind you that you’re being way too hard on yourself and that no one is mad at you but you. It also helped that after months of trial and error, I’ve found a new medication to help keep Fred in check (for now) and a few other medicines that help a little with the vulva pain. I’m starting to feel like myself again. I even have a bit of a sex drive (are you cheering? You should be!)
There were moments when I first launched Hedonish that I worried that being chronically ill would somehow disqualify me from being a good sex blogger—probably because I’d convinced myself that my body didn’t “work right” (FYI, this is totally not a thing. Everyone’s body works differently…and that’s normal).
I was so aggravated that something could feel amazing one day and do nothing for me or even hurt the next day (truth: this still totally frustrates me). That one day I could have awesome multiple orgasms and the next day I couldn’t have one at all. I worried that because so few toys seem to work for me, it would just seem like I hated everything. It took me a few months to realize what I always saw as a problem could actually be an asset, because if almost every toy gets you off, that’s amazing (and yes, I’m jealous), but it’s not the case for me and probably most people.
Being chronically ill is also one of my biggest motivators for becoming a sex blogger (obviously my other reasons were a love of sex and obsession with sex toys!) Even before vulva pain was an issue for me, I had so many questions from problems I would run into that not even google had good answers to—and I realized that I couldn’t possibly be the only person looking for answers. There’s a shockingly small amount of information about chronic illnesses and sexuality available considering the vast amount of knowledge on the internet and the fact that 50% of Americans, not to mention people internationally, live with some kind of chronic condition.
I love sex, but I’m also a person living with chronic illness, and it’s had an enormous impact on my sex life, so I’m going to keep talking about it so hopefully the next time someone goes looking for answers they’ll be able to find them—because being chronically ill doesn’t mean you need to give up having a great sex life.
(If anyone ever has questions, I’m really not shy, so ask away!)
Thank you for writing about your struggle with this chronic illness. Continuing to do what you love is one of the best treatments and I am happy that you do have some medications that can help with pain or triggers.
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Thanks for sharing! My chronic illness is Lymphodoema Distichiasis (sounds fancy, eh?!) It means I carry a recessive gene, and I have a double row of eyelashes in both eyes, one of which grows on the inside of the eyelids and scratches the corneas. My eyes are a mess of scars, and I subsequently developed severe Dry Eye Syndrome. Imagine trying to feel sexy when you can’t open your eyes properly because it feels like pins are being stabbed into them… Yep, that’s pretty much my daily experience. Luckily, my husband is well used to it, and he doesn’t get upset if I do sex with my eyes closed 😉
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Thank you for sharing <3