Hi all. I’m newly diagnosed(November 2017) and find it difficult to tell people. I am definitely not one for pity but when the situation comes up, does anyone else get sick of hearing how someone’s sisters friends cousins mother has MS and is perfectly fine? Or such and such has “this or that” and you should feel lucky you “just have MS” it almost makes me want to be in hiding with my MS. I get people might not understand it, but it makes me feel very alone at times.
Sometimes I say, "Thank you, I am really pleased that someone is having a better time with it(than I am)".
For those who say, at least you dont have cancer, I say, those people get to see an end to their difficulties.
Mostly I just say thank you, and let them wonder what I appreciate.
My mother did not acknowledge "my condition" as she called it, until she found friends who had children with ms, then she was part of the club and was proud to flaunt her badge of a mother with a child with ms. Then I was for her a commodity she could trade in.
Sometimes some persons have no idea what to say and just repeat like parrots what they have heard.
Show yourself all the kindness you need, then their insensitivity wont have any weight at all.
You always say it so well. Such a brave and wise woman! Thanks
Hey! I was diagnosed in 2015 at the age of 20. I am still in school, persuing a degree in physical therapy.. let me tell you- i have heard it all! What bothers me most is when people tell me what I should try. Obviosuly, I have looked into different treatment options for my disease. I dont need to hear what works best, unless I ask for it.
Sometimes it is nice to hear that people are doing fine with their MS, almost comforting. But, I do hear it a lot- almost as if the person is belitteling my disease.
Honestly, I tell almost everyone I met that I have MS. I do it so I can spread awareness. There are more people than you would believe who know nothing about MS, not one fact!
You know what- I think that it totally could be worse. I think all a part of healing is to invite positivity into your life. I have lived with MS for 3 years now, and I try to keep things as positive as I can!
We are all hear for you! <3
I have had MS since like 2011. I was always open about it I didn't mind telling people. Of course my story got worse and I wasn't fine for a while. When I tell them my story I tend to get kinda like wow it was that bad. I know that people are only trying to be sincere since it isn't directly in there family they don't always know how to react or what it even is. It's good you are on here because no body on this website will say its "just MS" because it has truly touched us.
I find telling people with a family member or who hvae it themselves they are very different. I just found out that one of my coworkers brother has it and now she has been making it a point to come and talk to me. I think its not only good for her but also great for me. She can see someone doing well after a diagnosis. Someone that fought something her brother might have to do too.
I work with cancer patients. I don't tell them I have MS. I feel like I can relate to what they are going through. When ever they say to me "I know some people have it worse" I say to them politely no, this is about you, saying that only minimizes what you are going through.
I don't want you to feel alone because you aren't. You are going through so much right now and that should never be minimized. I always hate when people tell me everything happens for a reason. I want to tell them to shove it up there behind. LOL. Anyway just remember your not alone we are here to tell you that boy MS sucks.
Thank you all for your kind words! I truly appreciate the support from you all. Hopefully things get easier with time, after things sink in and settle down. It’s new to me and still a shock. And it is so great to read your stories and know that people really do live a very normal life years after diagnosis. I am just trying to keep my head up and think positive.
I am sorry that you have had negative experiences when disclosing that you have MS. We have some helpful information about disclosure on our website
that you may want to check out. It included a worksheet that can help you work through your decision to disclose and some questions to ask yourself before making those decisions.
If you are feeling alone at time, you may want to consider joining a local support group
or calling us to talk to an MS Navigator. We are available 7am-5pm MST, Monday - Friday by calling 1.800.344.4867.
MS Navigator Stephanie
I totally understand how you feel. My own mother, a retired nurse, often mocks me for having MS if I bring it up. My father passed away in 07' from prostate cancer. Here's my backstory: I was diagnosed with Multiple sclerosis in late July of 2017 after a brain MRI came back showing lots of MS lesions and a spinal tap came back positive for high amounts of elevated protein 'o' bands. Due to the amount of lesions & 'o' bands, my neurologist believes I'd actually had MS for quite some time. I often feel very, very alone with this illness. First off, knowing I've had it for awhile and didn't know. It would have explained a lot of my struggles in life, and maybe helped with them had I known I had MS sooner. Aside from my mother showing almost zero compassin, I've also had a former coworker who I kept in touch with via email, stop responding once I told him I had MS. Also I've had a few family members not be very compassionate at all in regards to learning of my illness. No one in my family has had MS that I am aware of. My best friend does the best she can but it's tough for her cause she battles anxiety & depression on & off. I battle both anxiety & depression myself. I would recommend to you to perhaps seek therapy from a mental health counselor. I see a therapist currently, unfortunately they are not an MS specialist but it's still been therapeutic to air out my frusterations about my struggles with MS, my mother, my depression & anxiety and my less then stellar past. Life isn't ever easy but having someone to talk to, especially a professional, can provide some cushion. I also have an appointment in mid April to see a psychiatrist, and he will provide me with medication if it's deemed it would help me. As for MS medication, I take Tecfidera. I also recommend you try your best to stay positive, don't allow yourself to get too low. As I explained to my therapist, I struggle daily with very dark thoughts but I do my best to deflect them. My youngest Aunt took her own life via pills when I was younger and it still makes me sad till this day of course. That's not a way out but I don't judge her, it's her life and she can make her own choices. I try and keep my negative thoughts away and usually music is a great source of refuge. A little workout can help relieve stress if I am up for it physically. I also love philosophy it relaxes me as do my cats, or even a good movie or tv show. Not sure what will work for you. So again, I'd try a therapist, some relaxing music or whatever else you think could be of comfort to you. You are never alone, we'll always be here.
It is during our darkest moments that we must focus to see the light. - Aristotle Onassis
The support here is so great. Fortunately, I have been blessed with an amazing husband that has been my rock through all of this. I thank God for him every day! So I know I am not alone...he just can’t always understand what I am feeling. So it is very uplifting, when I am having a bad day to talk with people that have been through or are going through the same thing as me. Thank y’all so much for your kind words.
When listening to someone speak consider re-examining the sentence to see if you can find something positive in the statement. It opens your world to put some perspective on where we stand in the scheme of things. We are so focused on ourselves we forget that it is not always about us, or how we see ourselves, it adds dimension, and new depth to our thinking and reasoning. And, if you get stuck, watch Gracie Allen with George Burns, she translates the meanings of words into alternatives that are equally appropriate.
Yea it drives me insane my folks said the exact same thing something about how they knew someone who has it 30 years and is grand it actually infuriated me
Also consider that you may be overly sensitive.
For some perspective consider this:
When I was in my early teens my older sister fell for a guy who fell for her and they were planning to marry. he was going to go to a posh D.C. med school to become a doctor. HIS mother said to my sister that they were not going to be married because she, my sister and her family were 'white trash'. Now THAT is/was sensitive and unkind.