I was diagnosed with RRMS last year. I’m South American living in Australia for the past 18 years.
It’s been quite a journey — it took me three neurologists to finally find a good, compassionate doctor who truly listens and cares.
What’s been harder, though, is that I haven’t received much support from my family. They seem embarrassed or in denial about my diagnosis, which has been really painful. I can only come down to lack of information regarding the disease. Or maybe the fact that its invisible. I keep getting comments on how good I look. Little they knew that inside I wasn’t pretty. I was deeply hurt and grieving,
Thankfully, I have a wonderful husband who’s been by my side through it all.
My first two neurologists basically told me I had MS and left me to figure everything out on my own. It was overwhelming and isolating. Now that I have better medical support, I’m trying to focus on understanding my condition and connecting with others who get it.
I have been on Kesimpta for 6 months and I feel good. Its not scary anymore.
Finding the right doctor and support is very important, specially at the beginning, when things can be overwhelming.
Thanks for letting me share. I’d love to hear how others have coped with family reactions or found the right doctor.
That sounds really tough Kelly and I’m sorry your family hasn’t been supportive.
I think that a lot of people can find MS really scary. And maybe they are burying their heads in the sand, though that doesn’t help you of course.
And most people don’t know much about it, and how it affects people. And on top of that, they may not be aware that there are really good drug treatments now, that just weren’t around ten years ago.
I was told that the MS Society and MS Trust websites (UK) were the best sources of information, and not to Google. That’s been good advice and has kept me relatively grounded.
That said, I am dreading telling my children about my recent diagnosis. I am worried about how my daughter may be anxious about it.
I told my dad and he immediately started trying to problem solve problems which might come up but he future. That wasn’t helpful. But I didn’t expect anything different from him (which is a story in itself!). We also need to tell my in-laws. They will worry, and I don’t particularly wash to deal with all their difficult questions, but my husband has said he’ll do that. Phew! I don’t know if any of that helps? You’re not on your own.
Do you have any friends who are supportive? And is there a local MS group where you live? That might be helpful. It’s another way to find community.
That kind of embarrassment or denial is really hard to deal with just at the time when you might have expected some support. It sounds isolating.
Perhaps, sometimes the very fact people care about you can make them reluctant to accept what has happened… We also live in a culture (at least here in the UK) where relentless positivity is thrust upon you, as if a little positivity would iron out those lesions.
I have one family member who clearly did not accept my diagnosis, but instead simply refused to talk about it: he clearly thinks the whole thing is my neurotic imagination.
But I’ve also had a lot of comments from friends of the kind “but you’re looking well”. Perhaps it’s meant to be encouraging. But the implicit message can seem like “there’s nothing wrong with you” “you’re making this up”. And it makes me feel I am meant to say “yes, I’m so lucky, I’m doing really well” - even when I don’t feel that way.
I think it’s worth finding a few friends who are brave enough to put themselves in your shoes, imagine what your future might feel like and how frightening it can be at times. Thank goodness for your husband!
I hope you are all well.