Over the years of being sick, I’ve dealt with a lot of welcome advice, and a whole lot of unwelcome advice. It started when I was a kid, long before I even thought, or my parents even though, about something chronic. To be fair my symptoms back then were even more vague than they were as an adult, minus the miserable oral ulcers. In my early 20’s, though, I got married, and got sicker. It was a bad marriage, with a lot of stress, and situations that were hidden from the public.
One lie within the marriage was that I had fertility issues. I didn’t, but my ex did. We were young, and not ready for children anyhow, but when people questioned issues, I threw myself on the sword. To cover my ex’s ego, I said that I had fertility issues. At the time I was struggling with what doctors thought may be Lupus, but ultimately was just labeled an “unknown connective tissue disorder”. One woman very nonchalantly told me that my infertility was God’s way of saying I shouldn’t have children because I was sick. I sat there for a moment, wondering what she’d say if she knew the real situation, that my ex was the one with the fertility limiting issues, and the cause of those issues. (I should say as a disclaimer, while my ex did terrible things to me, and in our marriage, he has since gone on to have an absolutely adorable son. Given testing that was done, I was told that it would not be possible for us to have children without IVF. I was told that IUI wasn’t an option, and that with my health, IVF would be difficult.)
In any event, there was always more advice. Diets to follow, natural remedies to try, even healing crystals that would unblock whatever was blocked in my body. It was always something, and I was always polite. Until I had a diagnosis, it didn’t make sense for me to waive off the advice, even if it were things I would never consider. I am a scientific person, and without proof, I’m skeptical.
Then I got diagnosed, and the advice started to bug me. I also noticed that various fads would come into play. For example, I gave up gluten because my GI doctor recommended it. We couldn’t test me for Celiac’s Disease, because I couldn’t eat enough gluten to have it in my system for testing. I had eventually ended up eliminating gluten containing foods unintentionally, because I’d noticed certain foods made me sick, and others didn’t. There is actually evidence that folks with GI manifestations of Behcet’s, do benefit from eliminating gluten from their diets. The issue was that people started avoiding gluten for bogus reasons, and because I didn’t have Celiac, it was assumed that I was on the same bandwagon. I had to explain, repeatedly, that my autoimmune disease was benefited by elimination, and that for some reason my body couldn’t break down gluten.
The same thing happened with Aspartame. My current roommate still rolls his eyes when I refuse diet Coke, but will drink diet Pepsi. I have no clue why my body can’t handle it, but I can tell if I’ve gotten into it, and you’d be able to tell, too, if you knew me. Why? Well, I go from looking like me, to looking like a version of me that happens to also be seriously pregnant.
I’ve had friends chastise me, stating that I’m allergic to so many antibiotics, because I rely too much on “Big Pharma”. The truth is actually due, in part, to two separate things. The first is that the genetic mutation common in patients with Behcet’s, has also been linked to a condition called Steven’s Johnson Syndrome. Luckily I’m familiar enough with the situation, and it’s uncomfortable enough, that I discontinued antibiotics the first time I got it. A doubtful doctor prescribed a similar antibiotic, at which point SJS reared its ugly head, and I went to urgent care. I’ve been lucky to avoid hospitalization, but I do avoid any drugs I’ve had an SJS reaction to. The second issue is simple…my immune system is messed up. Whether or not I’m truly allergic to all of the antibiotics I’ve had reactions to, hasn’t been established, but it’s highly likely that I’m not. I am fairly confident I’m brutally allergic to Cipro, but the rest of the allergies I doubt. I’ve had seriously delayed reactions, I’ve had reactions in the ER when I haven’t been given anything. I’ll be seeing a new allergist soon, but I can’t do traditional testing because of pathergy issues.
Right now I’m dealing with a gnarly flare, including serious skin issues. I’m bracing myself for the advice. What to wash my face with, how hot the water should be, what to eat and not eat, various acne face washes…blah blah blah. The best part is…it isn’t acne. Please do not approach me and tell me I look good, but…just don’t. I don’t want to hear about your aunt’s friend’s daughter’s line of eco-friendly organic face cleansers. As much as you’re informing me from a place of love, your words hurt.
Unless someone is coming to you because they know on at least some level, what you’re dealing with, and you can tell they need advice, keep it to yourself. Unless you can say, “I hate dealing with that! I’ve always had to…” and leave it at what YOU’VE personally done, because you know someone is dealing with a specific illness…keep it to yourself.
I grew up with clear skin. One pimple was grounds for shock. When I started having skin problems, I thought it was acne. I was annoyed, that at 25, my skin was rebelling against me. I didn’t realize that what was going on with my face, could in any way be related to my Behcet’s. All my symptoms had been internal, aside from the joint swelling and long naps. Now I was covered on my face, with these lasting horrid pimple-like things. I also had raw red skin, from slathering myself with the various washes and creams I had self-prescribed, or obtained via well-meaning advice-givers.
You may mean well, but when you jump to conclusions about how someone looks, or what they’re doing, you may end up making them feel worse. Yeah, I may have an odd way of handling some of my day to day tasks, but that’s usually because doing it the “normal” way, is going to get myself, or bystanders, injured. My weird bumpy skin may prompt you to help, but at the end of the day, there isn’t really anything that can be done. It hurts. It’s frustrating. It just is.