Family Feud

Where do you go, when you cant even turn to family for support? Aside from just waging my daily battle with EDS, I've also been put in the unfortunate position of having to wage one with my grandparents as well (the only family I have remaining, excluding my husband, daughter, and in-laws.)
My mother passed away from complications of Multiple Sclerosis, which also starts out as an invisible illness until it eventually progresses and becomes bad enough that one cannot help but be bombarded with the outward symptoms. They accepted her illness, stood by her, and did everything they could to help her (in their own way of course.) That also included raising me, and caring for me when my mother had to move into a handicapped accessible facility when I was 13.
When I was diagnosed with EDS I tried to explain to my grandmother what it was, and it seemed that she was not interested in hearing about it. I showed her some of the things they tested me for and explained how everything in my medical history lined up with the diagnosis. She didn't have much to say about it, and I thought that the reason she was acting so non-chalantly about it was because I didnt make a big deal about it.
As I started to see more and more doctors, and specialists, I was given different medications to take. One medication in particular was originally manufactured for seizures, but has proven successful in managing pain, so the doctor thought this would be helpful in my case. It would be a win/win situation, I could take a medication to help manage my pain without having to take a narcotic. The draw back of this medication was that it came with some bad, but TEMPORARY side effects. I was still all for it. Some of the side effects included:
-Possible short term memory problems
-Possible speech difficulty (so sometimes it feels like I'm talking with a mouth full of mush and my words are not as sharp and clear as they normally are)
-Possible loss of appetite (so true, not hungry at all, EVER)

I told my grandmother about the new medications, but did not go into great detail about anything, because I have always been a fairly private person about my health (that has all been blown out of the water now.) She still acted like it was no big deal. So I did as well. Life as normal.

On one particular occasion about a month or so ago while I was visiting, I saw a coupon for Aleve and mentioned that I needed to pick some more up from the store. She then said "you're going to get hooked on that stuff you know." I kind of laughed it off, and thought she was joking, because everybody knows that Aleve is not a controlled substance.
Then, three weeks ago, my husband, my daughter and myself were over at their house visiting, and I was having a particularly bad day; both with the EDS, and with the side effects of the medication that I mentioned above. Apparently I forgot to buy a carton of cigarettes for her, I had gotten literally 2 hours of sleep the prior night, and I was in pain, so needless to say I was not looking at my best. I made a comment to my husband not to forget to pick up my prescription refill on the way home (that she must have overheard.) She then decided to come out and say "Now, I dont know whats going on with all of these pills you're hooked on." She was completely serious. I looked back at her, and in that second it hit me.... She didnt get it. She just didnt get any of it. The severity of the situation. The EDS. Why I was taking medication to begin with. She just didnt get it. I look healthy, so therefore I must be healthy. All this time, all of these weeks, after all of these doctors appointments, everytime I tried to explain it to her, she just wasnt listening, because she had it set it her mind that there was/is nothing wrong with me.
I couldnt help but to walk out of the room, out of the house even, crying. I left my husband behind to make an attempt an explaining the situation yet again, because I knew at that moment I was too hurt/angry/upset to even be able to try. Maybe I was being a baby.
After we left their house, my husband said he explained it to her well, and she seemed to have a better grasp on the situation and everything that was going on. I was still hurt by earlier's exchange, but relieved that things were settled now.
Its important to note that neither my husband nor myself has really during this time ever sat down with my grandfather and explained the situation to him. My grandfather much prefers to talk politics, the stock market, business, and other current events (I cant say as that I blame him, and I often engage him in such conversation.) So any, and all (if any) information he may have been getting on the subject of my health, EDS, or medication would have come from my grandmother.
Allow me to fast forward a week or two. My grandfather has been promising to take my daughter to Chuck E Cheese for her birthday (a few days after her birthday) and the time had finally come! So all five of us (myself, my daughter, my husband,my grandmother, and my grandfather,) head out to the oh so awesome place where "a kid can be a kid." My grandfather (who ADORES my daughter) buys her more tokens than she has any idea what to do with, and I escort her through the maze of games and rides.
Meanwhile, back at the table, little to my knowledge, my grandparents pulled my husband aside for an ever so covert meeting regarding..... thats right... yours truly. My grandmother did most of the talking from what I understand, and she told my husband that she was concerned because in her opinion I'm always "doped up." My grandfather said, he never noticed it, but that my grandmother insisted that that was the case, and that I must be on something. I'm not going to sit here and type it all out, but it was pretty upsetting hearing some of the things that she had to say about me, and I suspect that she never even mentioned the EDS to my grandfather at all. Apparently none of the conversation that my husband had with her a few weeks ago stuck with her. Its frustrating and hurtful all at the same time.... why cant they get it.... I'm not doped up, I'm not on anything bad, I'M SICK. They also asked my husband not to tell me that they had that conversation at Chuck E Cheese, which made both of us angry.
My response to the whole thing was to write a 4 page letter directly to my grandfather himself, since my grandmother doesnt seem to get it. In the letter I explained EVERYTHING, I even included the names of some of my medications that have been causing some of the side effects so that if he was so inclined he could verify it for himself with a pharmacist of his choosing ....Transparency has not, is not, nor will it ever be a problem for me, because I have nothing to hide, but that doesnt also mean that I dont have a right to privacy, and in a certain way I feel like that right was violated to clear my name. I hand delivered that letter to him, but other than that we wont be going back over there until I hear a response from one of them. I have enough on my plate to worry about, being judged by family shouldnt have to be one of them.