Let’s talk for a minute about judgment. If I had a dog toy for every time somebody told me what they thought of my illness, having no knowledge, no resources, no information about it—having never spoken with me before about it, having never heard my story or read my blog, simply from hearing about being in the hospital or on a medication—well, Happy would probably have the same amount of toys that he has. But then, I spoil my poodles.
I try to come from a place of understanding that this is a misunderstanding. That people are uninformed and uneducated and are judging based on that lack of education on my disease and it’s treatment and have very little in terms of a sense of reality for what it must be like to have multiple chronic, rare diseases and having to juggle the symptoms and treatment of those diseases with jobs, home, and relationships.
In other words: they don’t have a fucking clue, so why should I take their judgment to heart?
When people say things to me like “you’ve probably done permanent damage to your body because of the medicine you’ve taken”
Or “how would you even know when enough is enough with medication and side-effects? Do you ever even say no to your doctor or do you just take any pill he hands you?”
Or this gem, “you could really treat that with diet/exercise/ aromatherapy/ acupuncture/ juicing/ Tylenol/ physical therapy/ etc. etc.”
Well normally, I don’t say much. That’s because I’m in shock that anyone could be so insensitive and totally thoughtless.
I deal with it one of two ways.
The first way is ignoring it. Using the logic from above and reminding my inner rage face that this isn’t a personal attack on my character—this is a moment with someone who just doesn’t get it. And at the end of the day, it’s not worth my breath and spoons to set them straight.
Or I take a breather for a moment to get my thoughts together and to stay calm so I can come off sounding human and under control instead of psychotic and angry.
Here is the speech I should give, if brain fog could let me memorize it:
“You know, this is a very complicated illness. It’s not like having the flu and trying to get it over it naturally. This is a genetic disease and it’s very difficult to treat. I have actually tried acupuncture/juicing/ gluten-free dieting and for me, personally, it wasn’t successful. I really wouldn’t even entertain the option of taking these drugs if this was something that I could approach effectively in a natural way or even with less serious medication. But thanks for the tip.
“You may want to consider the idea that this is a very long road for me and I’ve been dealing with these symptoms for many years now. I wish I had found the right and easiest route to maintain my balance—but I just haven’t yet and I’m trying really hard to get healthy. I do my research and make educated choices—for me, right now, it’s the lesser of two evils and figuring out what will make me most productive—because I have a lot of goals and I have a career I’d like to maintain.
“I hope you can understand that I’m not trying to take the easy way out, because I can assure you—this is anything but easy on me. If you want to learn about this disease, I can have you speak with my doctor or read my blog. But otherwise—I hope you’d know me well enough by now to understand that I’m a pretty educated person and I’m making the best of a difficult situation with the choices I have in front of me.
“Being told I’m doing it wrong based on such little knowledge of my medical history doesn’t do much but genuinely hurt my feelings. Can you understand that?”
And when they continue to insist on just treating the anxiety problem—
–that’s when you kick them in the groin and scream “WHY DON’T YOU TREAT THAT WITH SOME MEDITATION, BITCH?”
(No, but seriously–I advocate for educating the uneducated–because as good as the above would feel–doesn’t change the fact that they don’t get it and won’t change the fact until you fix it.)
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