do people tell friends and family? I'm hesitant.. what's your experience been like?
Hello! Newly diagnosed feeling a little ... - My MSAA Community
Hello! Newly diagnosed feeling a little lost 😞
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Sophia87
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Welcome to the group. I told family and friends. Some family members are supportive and others don't show anything at all. As for friends I found out who was and wasn't, some have stuck by me and others have disappeared. Let us know what happens.
mrsmike yeh people are weird lol sounds like it was prob for the best.. you don't need people that don't care about you when you're going though health issues, I've told work they cared for about 5 mins lol and I told 1 friend who in a weird way seemed to enjoy the fact that her "successful happy friend" finally has to deal with some shit that's the vibe I got from her, her face didn't turn to sadness when I told her but more lit up which I was shocked about and regretted telling her instantly. I just felt it was fake sympathy. I'm a pretty strong person v comfortable with myself and not relying on others too much so I think I might wait it out until I'm at least a year or 2 on meds and comfortable with my journey....!
Only immediate family and really close friends. Your true friends will stick and support you through thick and thin (that includes your spouse or significant other) and you would hope that family do the same, while this isn’t always true I did find my immediate family to be more supportive. I didn’t hide my diagnosis I just didn’t openly talk about it.
I told the immediate family right away, simply because they were with me through the lengthy struggle to get a diagnosis. Then I told my work, because they knew something was horribly wrong and had been really good at providing whatever I needed. Everyone else just depends.
My casual friends are only told if I find that the MS is interfering in our interactions with each other. Like the others have said, sometimes those friendships go south.
The best are either strangers or former co-workers I haven't seen in a while. Or neighbors. They'll ask questions about my cane or the wheelchair, and I have no problem letting them know what's going on. How much I tell depends entirely on their level of interest.
HOWEVER, I do regret letting extended family know. I wasn't close to them in the first place, and the majority of them have been a bit snarky and insulting. I would suggest starting out slow, with the people you're closest to, and then move out from there.
If it's not interfering with your job, I wouldn't say anything to anyone at work. We have strict disability laws here in the US, but there's always a way for random managers to get around them. Letting your work know that you have a chronic illness of any sort could wind up backfiring on you. Learn about your laws and legal rights ahead of time.
I told people on a need to know basis when it didn't show. Now that it's visible i want to tell people.
That's basically why I told people. It took so long to get my diagnosis that I was bad enough to apply for full Disability right away. I wouldn't have told nearly as many if I wasn't having so many obvious issues.
It is a shock to get the diagnosis my husband has remitting and relapsing type and had been ok for quite a while even carrying on working however he is struggling now with symptoms. His family don't seem to take his ms on board at all I think its because they don't understand it. We don't really talk about it to anyone and deal with problems as they arise. Take care
I told my mother on the phone. It was the first time I've ever managed to stop her talking. Usually I feel I could put the receiver down, go do the washing up, and come back and find her still in full flow with no idea that I wasn't there. She just said "I don't know what to say" over and over.
I don't focus on it, but I've never seen a need to hide or share. There's also no need to talk much about my symptoms. When I tell someone, it's simply a matter of fact, an explanation.
When I was first diagnosed I only told immediate family and tried to hide it from most everyone else. That took too much energy. Now I share on a need to know basis. I find that even the people who want to be caring often aren’t and can’t really understand this disease. I always “look good”, so it’s hard for them to grasp that there’s something going on inside.
I told my immediate family at first and my mom put it on Facebook!! I was very upset. i was so relieved to have a diagnosis. But after that i had to deal with her way of coping with it!! I would have preferred to tell who i was comfortable telling so i could deal with it on my own terms.
I let my brothers know since they have a slightly higher risk and wanted them to know to report any symptoms to their doctor rather than ignore.My husband and son knew as they knew I was having testing to figure out what was wrong. My son was 15 at the time. Same for my work, I am a nurse and had been at the hospital 25 years at that point and my coworkers were very supportive. My symptoms didn't interfere with my ability to work at time of diagnosis, it was mostly sensory loss except for when body temp went up then had foot drop on the right. I used to hike with my coworkers so they would notice the foot drop at the end of our hikes.
I did have my doctor fill out FMLA paperwork for intermittent leave in case I had to miss work for doctor appointments or symptoms to protect my job. I never missed enough work for it to be a problem though.
Now the foot drop is obvious enough that occasionally one of my patients will ask about it.
I didn't have any expected reactions when I told people, it was always just because they needed to know for some reason. Actually, my husband seemed to need to talk to others about it much more than I did. Maybe it is because I am a nurse and did my own research or because I am an introvert and never really talk much.
I would suggest not having defined expectations for how others respond when/if you tell them. Everyone deals with things differently and what may come off as flippant may just be how they cope or just ignorance about MS. One of my brothers developed a cyst in his brain which caused balance issues. He of course went to the doctor right away thinking he had MS too. He told me he was sorry for not understanding what having MS meant when I told him I had it. When his symptoms started he researched it while waiting for his diagnosis.
Best of luck to you.
Immediate family and need to know basis. 5 years later I’m still hesitant bc people don’t understand.
Some people may think that what we have (MS) is contagious, so they stay away. Since Covid hit, almost everyone seems to be a bit more distant.
At first, I told immediate family, some friends, and some coworkers. Some took it ok, others made it about them. Now it just depends on the situation who I tell.
I told my Family and Close Friends. Will be in prayer for you🙏🏾
It was easy to tell since they didn't know anything about MS - and neither did I.
With family, I have little left, so I can't help you there. On the work front, I let my boss know since I took drugs that could make me a hazard operating heavy equipment. Told my immediate co workers, just in case I fell down or something like that. There were no problems for five years until the ol' short term memory started to go, then they were willing to let me get on their internal disability plan (no work with pay) and all was okay as I had fought those 5 years of work to do everything the best I possibly could. I've had MS for at least 15, possibly 20 years, and have been diagnosed 12 years ago.
Hi Sophia87, you have gotten some great suggestions on who and when to tell. The only thing I would add is that sometimes you or sometimes someone close to you needs to explain certain aspects of your MS. For me it is the heat. When I am on the sun too long and don’t cool myself down ( like I know I have to) I get like a noodle and can’t even stand up. My husband then usually explains to people it’s the effects of heat on my MS and I will be fine once I cool down. The people who matter will be supportive and you will find them a great resource. The rest, there is a reason they don’t make it into your present or future.
I told everyone. That avoided questions later, I believe. If I wasn't up for something they already knew. Nobody was negative about it.
Welcome! I told most people right away for two reasons; I get to say it before the gossip whores can, and those who actually care are informed by me. I didn't want to talk about it over and over. It was also something I had for many years and the damage was noticeable by the time I got diagnosed.
Welcome to the group. I've never bothered trying to hide it from anyone. I was having a lot of cognitive and memory problems just before my "official" diagnosis. Before that I was having problems with fatigue (I had been blowing that off as sleep deprivation catching up to me) vertigo and problems getting my hands to do what I wanted them to. With those symptoms I was diagnosed with "probable MS", whatever that means. I got spun around in circles for almost 5 years before getting the "official" diagnosis. Any way most of my co-workers were great. One complained "Why don't you just do a simple surgery to fix it like my friend did?" I told him to describe to me what he thought MS was. He described scoliosis. I explained the difference between the two to him. One of my coworkers was really great. He introduced his wife to me. She has MS as well and is originally from England. She gave me all kinds of great advice on how to deal with MS. She also explained how to spot BS articles on miracle cures and scams. She also gave me some great resources for research and help when needed. One of the websites she introduced me to was the British MS Society website that has many pamphlets that can be downloaded for free with many of them available in several different languages. I downloaded everything they had in both English and Italian. I printed off all the Italian language ones for my husband and his family. They are Italian and don't speak English. I did that back in 2017...my husband has yet to read any of them. He expects me to explain everything.
Most of my family have been rather indifferent to the diagnosis, some are supportive, and some of my in-laws however are convinced that I should already be acting like a bedridden invalid. I may get that bad someday, but I'm certainly not going to pretend that I'm already that bad. I'm not an indoor person and generally speaking that's where beds are found.
Best of luck to you with what you decide to do.
Hi, glad you found this place. My experience was from decades ago, there were no disease-modifying therapies back then. Anyway, I didn't tell my parents for about two weeks. I had to tell the people where I worked, it was becoming obvious. My mother's reaction was to get me to see more doctors for second opinions. My dad's was to blame himself. He didn't understand it's no one's fault. My sister, always trying to help, but never quite getting it right, and the stress the whole thing put on my parents is what is so awful about this disease.
When I was first diagnosed I only told my wife, parents and inlaws I eventually told the 2 people that I worked with (I was a firefighter) I eventually told my deputy chief and retired on disability now I tell anyone who asks
Welcome Sophia. Good community family here! As I have gone through this journey; I have found somethings only we get and understand the best. It's not because love ones aren't caring, maybe it's fear of not knowing "what to do - or say" in those situations. That's a good time for them just to sit back and listen to us!
Real friends will always "stick and stay" others let them be. I enjoyed being able to find new friends in the journey; supportive and caring. You will too Sis. Be encouraged!
Peace and Blessings
NeeC
Glad you found the group. It's a great place if you need to laugh, cry, vent, or ask questions. i told my family & my boss at first. Now I tell whoever needs to know. Everyone is different so they take the news differently, just as we with MS are different, our symptoms & reactions to meds are different. Go with what is in your heart & what's best for you. There is a lot of information on the web about MS now so do as much research as you can, the more you know about MS the better equipped you are to handle this disease as it progresses & it will progress as time goes on. For some, it has progressed swiftly & some very slowly. For me, it has been very slow. I haven't had any changes in my MRIs for over 15 years now, probably due to DMTs (Disease Modifying Therapies). I was diagnosed in 2005. I wish you the best during your journey with MS.🤗
That is really great to here often online only the progression stories are shared and not the better news so you don't hear it as much, can I ask have you been following a particular diet or just in general have a good diet etc ?
I have cut out foods that will raise my insulin levels, mostly carbs & sugar, fruits & veggies that will instantly turn to sugar, breads & most dairy. I will eat hard cheeses from time to time. I'm not diabetic but high insulin levels will cause your body to store fat. I try to eat meats with some fat in them along with fruits with fats, like avocados, & nuts as we need fats to make everything else work together. I watch my salt intake too. It's almost like Keto but because of the DMT I am on (Vumerity)I have to watch the fats.
Let close family and friends know. Be very discerning about who you tell at work. I only told people at work once it was obvious that I was having health issues. If you live in the USA, get a copy of the Americans with Disabilities Act (ADA), so you know what your legal rights are as a person with a disability. I do not know if there is similar legislation in other countries. Good luck and keep a positive attitude. Blessings.
I don't bring it up, but I don't avoid it either. If something comes up, physical or cognitive, I'll say something. If the person acknowledges, I may make a brief comment like "Yeah it sucks, but you learn to live with it". If they don't acknowledge, I'll just move on.
Hi Sophia & welcome lots of good advice is here know that we care & love each other, I would add 1 important thing there is NO KNOWN CURE! yet I have been dealing with remitting/relapsing MS for over 28 yr now. In the beginning lots of people tried to convince me they knew of a (cure) they also thought I had muscular dystrophy. Each 1 reacts differently to drugs, we have been there where you are & are willing to share with you what we have been thru so just ask you are on my prayer list now. Mary
carolek572CommunityAmbassador
Welcome to the forum, Sophia87 ! I would encourage you to visit mymsaa.org for any advice on the subject. In my personal experience, I would err on the side of need to know because I am a private person and I don’t want anyone to worry about it. But that is my opinion. Keep Smiling 
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