I feel so fortunate to have found this site, and so stupid that it took me this long to get here. I do have a suggestion for your mom. I shared the "Invisible Symptoms" video they have as a link on this site. Like another person shared - family seems to "get it" or believe it when it comes from an outside source. At lease it helped my parents to understand it is a real thing. But saying that, I don’t think you can really understand it unless you are experiencing it.
To be selfish and use my own situation as an example -
I have had MS probably since I was 19 or 20. I am now 55. But it wasn’t until these last couple months - when the Cognitive and Fatigue issues became so bad that the words people have been saying about how they feel and how it affects their life became real for me.
After my worst crash (doc says exacerbation, I think new injury ) my fatigue became truly debilitating - that along with extreme cognitive challenges have me unable to go back to work. As I was sitting in a chair feeling like my great grandmother sitting in the hall of a retirement home, unable to even think of sitting up straight, let alone getting up and moving - I felt like I finally understood what everyone was talking about.
Although I said that my family now seems to get that the fatigue is a real thing, I have other symptoms (more visible). Those new mobility challenges aren't stopping me from working - But to my family (and even some of my doctors) they think the real issue is the mobility and accommodating that will get me back to work. Walking with a walker and AFO on a good day and wheelchair on a bad day is really a non-issue for me in comparison to the affects the fatigue and cognitive issues are having on me. People say that it will get better – and the fatigue is often better than at my worst… But the cognitive issues seem to be getting worse.
But let me jump now to support my family a minute to say - I don’t really get it, the ups and downs and ever changing symptoms, so how can I expect my family to. This is a crazy disease we all have~
Thanks for letting me vent. And thanks for sharing here. It means a lot~