Beware that this is a pretty sad story with mentions of death, ableism, and opioids. It's a heavy story, but it's definitely something that has been on my mind a lot.

Today is the 5 year anniversary of my grandma's death. She's the person that we believe I got EDS from. I went to see her at the cemetery with my mom and we were reflecting on how poorly she was treated and feeling guilty that we didn't spend more time with her.

She didn't have a lot of symptoms most of her life, but in her 50's when I was about 4 years old is when she'd complain about her pain. She complained about her back, hips, and knees. Nobody ever listened to her. Everyone in my family thought she wanted attention. Even my mom didn't believe how bad it was for her. My mom thought that there was another reason that she stopped doing things with us because my mom has some trauma with my grandma's past husbands and she hadn't forgiven my grandma for not putting my mom before her husbands. Not long after her pain she started smoking more, went on opioids, and got a few surgeries for various things that she hoped would cure her pain. My family then thought she was a drug addict.

I feel so bad for her. She had to go through this exact hell all alone with not a single person supporting her. Even her husband said terrible things about her behind her back. It's ironic that my grandpa put "soulmates forever" on her gravestone. Seeing that today was hard, because I don't believe my grandma ever had a soulmate. She got so fed up with how my grandpa treated her because of her chronic illness that she left him. The only reason she remarried him is because my mom begged her to go back to him after she had gotten herself into an even worse relationship. My mom told her to go back because she knew she wouldn't just break up and be single, my grandma always felt like she needed a man in her life.

My mom said that she feels guilty for not supporting her more. My mom made me promise to not feel guilty for anything when she dies because she told me that there's nothing I could do to make her mad at me forever. My mom and I never made fun of my grandma, but a lot of other people in the family did and it just reminds me of how awful my mom's side of the family is for the things they said.

That's not to say that my mom and I did nothing wrong. We should have spent more time with my grandma and supported her more. Yeah I was a kid, but I was a teenager by the time she died. I could have asked to go see her, listened to her vent, or told her that I supported her.

What makes me feel even worse about this whole situation is the fact that my grandma never got a diagnosis and that she's not the only person this has happened to. Idk what I'd do if I never knew. I can't even imagine what it would be like to never in your entire life have even one support system. She didn't know how to use the Internet, so it's not like she could've found a reddit community either.

My grandma got the worst of the family stigma, but there were some other women on my mom's side of the family that had to deal with the family's ablism I'd call it to be quite honest. I'm not going to make excuses or sugarcoat it. I'm sure my family has probably said terrible things about my mom and I. I believe a lot of this also stemmed from sexism honestly. My cousin has pretty aggressive cancer, but she never complains about it in fear of what the family would think.

Idk what I can do to ever make it up to her besides sharing her story and hoping that other people don't repeat the mistakes my family made. Even then, I still know it's not enough for her to ever have justice about the way my family treated her. I wish there was some movement for this kind of situation that happens to way too many disabled people. I wish there was a hotline or something that could get people like my grandma the desperate support that they need. There's LGBT safe spaces I've seen where they don't allow people to discriminate and everyone can just vent their problems. Why can't there be something similar for disabled people? If more awareness was raised for disabled people than would my family and other families have reacted differently? It's too difficult to find outside support for the mental burden of being disabled and something needs to change. I just hope that future generations of my family never repeat this mistake.