I get it - this is something I struggle with as well. Through this experience I've learned that all people (DRs and family included) are egocentric and will never truly understand what we're experiencing unless they have MS too (and even then, symptoms are so varied, that doesn't mean all folks with MS will understand).

The best thing I did was have those close to me read a short book called 29 Gifts. The author was diagnosed with MS shortly after her wedding, and it's her story about her diagnosis, her varied symptoms, how she built a support network, and how she turned the diagnosis into something positive in her life. The story is incredibly moving and it was helpful for my family to learn more about the struggles I do (and may someday) have without me having to tell them. I've also shared articles, but the most helpful thing by far was 29 Gifts. It was my Christmas gift to family last year.

As far as DRs go, I found a cool MS symptoms tracker online that I periodically fill out (every 6 months or so, or more often if more major changes). By sharing this regularly with my care team (Drs and family) I can communicate how I'm doing in a way that seems less emotional and more data driven. Also, I find that the nurses you can reach via phone through online pharmacies for our DMTs (like Biogen's online pharmacy, or Copaxone's Shared Solutions) were incredibly helpful and caring - and easy to reach short notice. When I had a reaction to my meds, they were able to help 24-7 and had much more helpful suggestions than my DR did. I also get a TON of helpful information and support from this site. Searching through the question bank yields an incredible amount of info. Finally, keep searching for a DR you feel comfortable with. I have multiple doctors at different hospitals - and one who has MS herself - and that's been a huge help to have a larger care team so I get multiple perspectives. I also can rotate who I ask questions of so I don't become too needy with any one caregiver. Hang in there - not an easy solution to this one.... XX

I go through the same i feel like on the days i dont do much from tiredness and pain i cant do much and feel im being looked at by family that im just lazy or just complaing because i have days where no one would know i have MS to days were i cant muster the energy to get out of bed from depression. My husband always has a good attaitude about life and never can understand why some days i am quiet and moody and depressed he says i should be happy with my life and dont get me wrong i do have a great life but i also have MS and ppl cant seem to understand that its why this site has helped me deal with things SO much so thanks to all of you who share there struggles with me it makes me feel normal

Thank you for sharing!! I also feel like it helps to know that others have similar struggles.

I’ve asked similar questions and I’ll spare my lengthiness here lol but if you go to my Q&A you’ll see what I mean. You’re not alone in feeling unheard. What you’re describing with your doctor is not you being a complainer or that you’re acting unreasonable. I’m on my 4th neuro and I think it’s partly cuz I’m a straight shooter. I finally switched to a private practice and the care has been amazing. When leaving my first visit, he said you’ll never be left hanging... Don’t they all say that though!? Then he started writing and handed me his card. He said when people come in and say they haven’t gotten a response I know it’s not true. This is my cell. You call me if you need anything that hasn’t been taken care of. What a sigh of relief that was. Best part is that I’ve yet to use it because the office does respond!
As far as the family, maybe he also doesn’t want to make you feel bad, especially when it’s not something they can necessarily help with? If you casually point something out, would they still ignore it or would it open the door for conversation? I’ve noticed my kids will only point something out if it’s because I’m doing something I “shouldn’t” be or if it’s excessively weird to be happening (like I was shaking freezing cold despite the house being 68). Otherwise they sort of know the “normal” and we all carry on, if that makes sense...

I agree with the neurology Dr. I have to find the right fit, but I need to get back on a medication so I don't want to switch and take more time at this point. But I'm glad to know that others have had to switch a few times to find the right dr.!!