Having Hard Discussions
So many in the community have encountered this so if you have advice or experience navigating the following situation, please do your fellow community members a solid and share your experience. Thank you!!
How do you communicate your MS symptoms to friends and family who seem dismissive or uninterested in understanding your pain and fatigue?
If you’ve encountered skepticism from loved ones, how do you address it, or do you choose to cope with it in other ways?
What strategies do you use to help them grasp the reality of your condition when they struggle to acknowledge your experience?
How do you navigate those conversations or manage the situation on your own?
Yes that is a tough one, family don't understand sometimes and can do a number on your self esteem. I was very independent and all we can do is take one day at a time
Gaslighting by your own family is extremely painful. I have been in hospital many times because of pain and complications. My 4 siblings don't bother to visit me when I'm in hospital, which can be up to a month. Maybe over the years I have told them not to bother, and they don't. 
, oh, my. I am so sorry. I wish your siblings came to see you when you were hospitalized.
Gentle Hugs, Erin, Team Member.
I've just ignore them. FULLY. Almost my entire family has either disowned, discounted what life is with MS for 30 years is like, or right out robbed and stole everything around me. My "family" left me with no options, no money. and no home. With a quick trip to an unknown lawyer they changed of a 50+ will ,written before I was even born, leaving me homeless with the only option crawl of to die in a gutter or live on the streets. This was done within a few weeks of my last parents' death. They even tried to have me forceable "legally" institutionalized and placed in a state mental institution. Lucky the lawyer knew with any questions would have put his entire law practice in jeopardy. I would gladly say is that this is lowest point in my life. Its broke me. It broke my life and any thoughts of stability and burned all my relationships ,with my so called "family", to the ground.
10 years later I still haven't recovered or reconnected to any of these people. Doubt that I ever will ever resolved.
that breaks my heart. It's one thing not to understand or provide meaningful support, your "family"'s actions sound positively malicious. Thank you for sharing your painful experience, and i hope that some one has been able to provide succor. In solidarity, Therry, a Team Member , you deserved better. Full stop.
I know it's NOT the same, but my father just recently tried to cut me out of my Grandma's 23-year-old will, so I know how hurtful that kind of action can be. It feels like a betrayal at the deepest level.
But, beyond the whole will thing, you didn't deserve what happened to you.
Gentle Hugs, Erin, Team Member.
I was diagnosed 26 years ago. I am very fortunate that I don't exhibit significant VISIBLE disability but that also makes it hard for people to grasp the reality. I've tried very hard to educate and explain, and I think most people try to understand academically, but don't really get it on that internal level. I say "I am feeling the heat and the MS fatigue is overwhelming". They respond ok but because they can't see it, still don't "get" why I spend most of the day in a chair rather than cleaning house or.... If people judge or dismiss, you can't make it your problem. I think the most important coping strategy is not taking any response too personally. I have always been fiercely independent and cling to "I have MS, it doesn't have me" but that can come back to bite you. Start asking for help, be a little dramatic if you have to. SHOW people your struggles so they have something to process as they try to understand.
You're one of my favorite writers. Your response means a lot to me! darlin', you just inspired me to finish another piece! Your response means a lot to ME! Thanks!
I just share this
Pic to educate family and friends.
excellent picture, it's a perfect description of a small % of what M.S sufferers go through. almost all of us have some if not all those invisible symptoms. So I don't follow you.
