MS and family/friends. Do they "get it" and how has that impacted you?
Being diagnosed with MS can be pretty alienating. At times, it feels like you can only "get" MS if you get MS. Sometimes, no matter how much someone who doesn't have MS reads about the disease, it can still feel like they don't understand. That's if they take the time to try, not everyone takes the time to learn about our illness and that can be frustrating.
I am somewhat lucky (if you can call it that) that many of my family and friends had some knowledge of MS because my grandfather had it and we cared for him. Even with that knowledge, I have still experienced issues with them (having to cancel often and also not traveling much has been problematic at times and make me pretty bummed). I've done my best to educate them over the years (usually by sending articles from this very site) and I think that has certainly helped them understand more. So I can't imagine what it must be like to have someone not take the time to learn even the basics of MS.
So how about you? Do your friends/family understand your MS? Have they taken the time to learn? Have you helped them learn? How has their attitude toward your illness impacted you?
I have allowed myself to become self isolated pretty much. I worked full time for nine years after my diagnosis. Been on disability for the past three. My boss at the time of my original diagnosis understood, somewhat, the changes I was going through and allowed me much leeway at work. Unfortunately, the last 4 years of work found me with a new boss that didn’t necessarily believe I was sick. He moved me to a new location over a hours drive from my home. That’s when I took my neurologist advice and went on disability. Nobody truly understands the mental aspect of MS, and I can’t seem to explain it correctly. Thus, I stay home a lot and don’t really want to engage with anyone. Far cry from who I was before MS. I know I need to change my attitude toward people. Maybe someday soon I will.
My world is smaller too. Lack of energy to take the hour to get dressed to go out with them. So ive been replaced with others who can move fast and have money to do things. I was forced out of my job by an unsympathetic boss. I did lab work which is a very physical job i shouldve put more thought into what i was doing back then for the large possibility my situation may put me in a wheelchair and make decisions accordingly..too late now. Yes its hard for people to understand your struggles. It probably wouldnt matter how you explain it. Try not to be hard on yourself or them. Its nobodies fault
yes for me too. If there is alot of info thrown at me all at once or instructions i have to read through or apply i get overwhelmed and cant do it. Not conducive to lab work. I have a small pt job that requires little brain work but is pretty physical. Which is also hard. Im 63 and have been trying to stay in front of this disease for over 20 years. Somtimes i have to stop and search for 10 things im thankful for and realize some of those things theres a person who cant do this anymore.. i remember a girl named jennifer who had ALS at a very young age. She missed holding coffee up to her nose and smelling it. She couldnt wipe her own tears. I feel for her but i dont fully understand what its like to be her
They are still clue less still after all the information I have given them . And then they see me and ask wondering why I’m walking funny. The body cramps the tremors. It’s very tiring
My husband has been extremely supportive with me, for which I am grateful. My adult children seem to get it sometimes and other times not so much. Extended family and friends only a few seem to understand. I find what is most important is that I GET IT! So I can best decide what my ability is and what I can do to help myself through out each day. What I share and with whom.
I encountered some disbelief until I was forced to use a walker. The disbelief disappeared. People became very understanding and supportive. I am not at all bitter about their initial disbelief. I get it. There is far too much fakery around us all. Everyone is cautious about what they will allow themselves to believe. It’s a damned shame. It sure is. I commend you for your generous understanding regarding their disbelief in the beginning. I don’t think I could be that ounderstanding. Wishing you the best David.
