Fred: My Chronic Illness

I am the less-then-thrilled owner of a chronic illness.

The specific illness, for right now, isn’t super important (and quite frankly, it’s rare enough that it could compromise my anonymity, and I’m not ready for that yet I wrote another post with the specifics, check it out here). Please trust that I have one (actually, I have lots of supposedly unrelated conditions, but let’s focus on just one for now), and when I tell you it’s an enormous pain in the ass.

[Edit: About a year after I published this, I decided to share more information about my chronic illness, both to help give readers context (something I find helpful when reading other blogs) and also to help educate and bring awareness. Click here to learn more.]

Let’s call my illness Fred (because, you know, why not?) Fred is a systemic disease, meaning it does or can affect every system in the body. A lot of things (triggers) make Fred act up, and in turn, make me sick. Fred affects a particular type of cell, which contains many different chemicals that release into my body when coming in contact with a trigger. Researchers are still learning about Fred, but they think these cells might not have the same ratio of chemicals in every cell, or they might have entirely different chemicals in different cells.

Basically, that makes my life like a game of Clue (it’s Mr. White, in the Library, with the candelabra). The symptoms vary greatly depending on a few things: what triggers Fred, where in the body the chemical-releasing cell is, and what chemicals are released. Oh right, last thing, Fred’s triggers change constantly. The good news: I’m never boring!

Fred also causes me to have a lot of allergies (without getting too medical and boring everyone, they’re technically “sensitivities,” as they’re not IGE-mediated, but I digress). I have to change many of the products I use every year or so because an ingredient that never bothered me before, suddenly makes me sick in one way or another. In the last few years, I’ve gone from being able to wear perfume or use products with fragrance, to sometimes becoming instantly ill when someone walks past me wearing it. Fragrances and chemicals have become my personal kryptonite.

You’re probably wondering what the hell this has to do with sex.

I know my experiences in dealing with Fred are completely different than what someone with a different, or even the same disease, might experience, but I would be extremely surprised to meet anyone with a chronic illness who felt it didn’t affect their sex life/sexuality in some way.

I was diagnosed in 2009, but it wasn’t until last year that I met someone who, although she doesn’t have exactly the same disease, has similar symptoms. As soon as we were in private, the first thing we asked each other were questions about sex. Does everyone suddenly develop allergies to latex or lube that they’ve used for years? Do other people’s stomach’s hurt the day after having anal? Does being fingered feel good because it’s scratching a literal hive-related itch, rather than a metaphorical one? Despite my excellent googling skills, resources about chronic illness and sexuality are sparse and never seemed to have the information I was looking for, and I hope to eventually make Hedonish a resource for finding information that’s difficult to find elsewhere.

It’s really surprising to me that I’m much more anxious sharing my experiences with Fred then I am writing about the intimate details of my sex life. I’ve found that having a chronic illness is something that’s really challenging for people to understand, especially if it’s an “invisible illness” (meaning outwardly, I look totally healthy) or a rare disease they don’t know about, of which Fred is both.

It’s hard to quantify just how much my life is affected by having a chronic illness, despite my best efforts to just live my life. Sex is one of the areas of my life most heavily influenced by Fred, and, in turn, I’m sure it plays a role in why certain toys work for me when others don’t. There’s a lot I don’t know, but I do know that it is possible to have a chronic illness and a great sex life (whatever that means to you). Stay tuned 🙂

If you have any thoughts, comments, questions about chronic illness, comment below or send me an email at hedonishblog[at]gmail.com (I’ll never post anyone’s information without their consent). Go on, don’t be shy!! I would love to hear from you!