A harder question

What do you say to people that think it isn't real?
 I'm of the belief that if someone doesn't believe something is real, and they don't want to, no amount of arguing with them is going to change that. All it's going to end up doing is upsetting me and they'll still be pretty damn smug in their assumptions. I will say that I know differently, and that we're done with the conversation. This would also be my cue to end the relationship completely, and I don't care who it is. If my mom told me I'm lying and there is no such thing as fibromyalgia, no matter how close we are, I'd be done.

When you have it, then you can talk to me about how real it is. Until then, get the fuck out.

I have had one doctor so far that told me that he didn't believe fibromyalgia was a real disease. And if it was, it wouldn't be as widespread as he's seen it (let's ignore the fact he was a migraine specialist, and that migraines and fibro go hand in hand and no wonder 75% of the women in his office have both.....) That was my last appointment with him.

Unfortunately, there really isn't a good answer for this question, because it's always going to come from someplace different for each person, and not everyone is going to be as quick to be done as me. Some people get it from friends, some from family, some from doctors. Even if you choose not to engage, it still hurts. How could people think that something so difficult and so widespread is all a lie?

While leads into 2 other questions asked, so I'll include them.

I would ask how others treat you (friends and family). I have a good friend who has fibromyalgia. Her family thinks she uses it as an excuse to get out of doing things (housework, job etc...). Do people treat you that way or do you get a lot of support?

 It's definitely a mixture. 


My closest friends treat it as I think it should be treated: It's there, it's real, support her to do what she can, but be ready for when she can't. For example, in my coven (they're like family to me), they are willing to do anything to get it so I can be included in activities. Say they want to do a nature hike. Fionna has told me time and time again, she will let me walk as much as I can, and then come hell or high water, they will get me through the rest of that hike even if they have to all push the wheelchair. 


My close family is the same way (like my mom and step dad, Asher, my cousin Sara, etc).


Most of my family (aunts, cousins, uncles, etc) don't really want to hear about it. They don't really care. Which can be very hurtful. I've gone back and forth multiple times with my mom about how certain family members just don't care what happens to me, and how it hurts to know they don't love me. And mom tries to show me examples of how they do love me, and with some of them I do sway on whether I think they love me.


I, luckily, have actually come across very few who extend the type of treatment your friend is going through. One was a doctor; my first fibromyalgia doctor. He told me that I was the one that was refusing to get better because I wanted money from disability. It thanks to him that I don't have a doctor specifically for fibro right now, and why I am so afraid to see this new rheumatologist at Cleveland Clinic. What if the new doctor thinks the same thing about me?


And then there is Asher's mom... Apparently there was a lot of shit talking when I had to finally give in and quit school. Her and his great aunt have it in their head that I'm using it to be lazy and to mooch off my fiance. His aunt has actually asked him about it. "What is wrong with her? Why doesn't she work? You need two incomes coming in!" She does it in such a way that you can't really go off on her, but you know what she is trying to say...

Do you feel that others around you (including friends, family, acquaintances, strangers) have a good understanding of and respect for your disability?

For the most part, no. Very few know exactly what I go through, and what it all entails. Only really my mom and my fiance have done research for it, and know better than anyone what I can do, what I can't do, the disappointments, the setbacks.

I think for the most part, people are respectful about it, but they don't have a good understanding because they don't put the effort in to truly understand it.

Now don't get me wrong, though. I don't hold that against people. All I really need for my friends to understand is that I'm not snubbing them or being rude if I can't make it to something because I get sick. And I still battle with that because too many people take it personally instead of what it really is: a body that is sick.

Maybe one day they will have a really good understanding of it. But I'm fine with it.