First off, thank all of you for this forum. I’ve had great success telling my friends and family about my recent SPMS diagnosis via text message. It’s a cop out, I know but in person , seeing the sad looks makes me breakdown, which makes it worse. Now, when I encounter my friends in town (very rural small town) it’s a happy event. So with that being said, I have a YouTube channel and for years have been editing out my handicap. Watching others, like ‘Sara’s Living with MS’, I think I should ‘come out of the closet’. I’ve tried on camera and even after many attempts, still breakdown and cry. So I think I just figured it out!! I’ll do a voice over, off camera. Maybe over a young lambs playing video? Honestly I hadn’t thought that through until typing this post. Well thank all of you for this forum !!!!! Has anyone else had the problem of admitting MS to friends and family? How have you addressed it?
How to admit it?: First off, thank all of... - My MSAA Community
How to admit it?
I've run unto acquaintances who have asked me why I use a cane, thinking I just sprained my ankle or something.😅
I suppose it's not a weird question.
I've had a man think it was part of my outfit. Right.😂
Another time, a woman took issue with my wearing heels & using a cane.When I told her that I have MS & will wear heels until I can't, she STFU.
I could've saved time by just telling her to stfu & myob but I'm nothing if not a timewaster.
The wheelchair's another story.
Most people are considerate but some stare as they try to figure out what's wrong with me.
I stare back until they look away. I win every time unless it's a baby in a stroller.😂😂
They cant control themselves.
You can learn a lot about a person in how they react to hearing what they thought they needed to know.
I was diagnosed later in life at 68 yrs old. I had before that been very active, riding my bicycle 200-300 miles a week. Having lots of fun after retirement. Then Whammo! Woke up numb on my whole right side. Got a preliminary diagnosis within a month & confirmed by MRI’s 5 months later. Was referred to a great Neurologist. Many of my friends didn’t know of the diagnosis just thought I’d started seeing others. Now I am usually the one to bring it up like when I have limitations in some of the gym classes I take. “LIFE IS NOT OVER, JUST ADJUSTING!”
So true… my new motto is “Hold My Beer, I’ve got this!” So by midday I’ve usually been ‘NerFF’d’, nerve fiber fatigue’d. In the morning I can step up with my left to the first step on my big tractor, then drag the right leg up. My right is useless. Later in the day, I need to use a light plastic kitchen step to make it up to the bottom step with my left foot. I have a length of bale twine tied to it and the interior door handle. Once seated in the tractor, I pull the step up and take it with me. That’s my adjustment! I think a video of that might work to break it to my subscribers… even with MS we can adapt and overcome. Thank You!
I should do that step/wire contraption for my husband's truck. I'm 6 feet tall but his half ton pickup is difficult to get into!
it works. Be careful on uneven ground…. Like a stubble field. The voice of experience! LOL
I’d need a 5’ ladder!
Most definitely. I have not 'come out of the closet' to most people. My close family knows and two friends. None of my neighbors or acquaintances have I told. I'm afraid they're going to look at me and look for signs like my stumbling or something. I feel like I'll be under a magnifying glass. It's like a dirty little secret I'm hiding. Mainly I think it's because of my raising and my mother who everything was a secret to be kept and what would people think philosophy.
I can understand that. I was very active in our community. I'm a retired fed. agent and former Arena Director for our County Fair and decade long vice president of our counties Back Country Horseman on top of that I was a 4 H leader and still a Director on our counties Noxious Weed Board. Other than being retired, it has all ended as my very noticeable inability to walk has become insurmountable. I'm still a Director but usually attend meetings via Zoom or Speaker on the Cell Phone. People I'm not close to, I have no problem telling. It's grown up kids, their parents etc from the fair etc that I feel emotions welling when I have to admit my body has failed. It's these times that are the hardest. Thank you Humbrd for sharing.
The only thing that scared me about my diagnosis was telling my mom. So my dad blurted out. " She's gone BS to MS!"🙄😂
Thank you for the smile! My parents both passed a decade ago. I didn't travel to visit them as much as I should have. I hadn't thought of that until your comment. I didn't like travelling as the misdiagnosed degenerative disk disease made it too uncomfortable. Now I know it was the MS. Thank You for the reply. I hope your parents are well. Time... it goes on and you can't reverse it. Thanks again!
My dad's a dork. I appreciate your comment. Especially about your parents. I am so sorry. I'm sorry I made you think about that. I once heard if you visit your parents 2x and year and you know you have 5 years left you think. "good I have 5 years." In reality we should be thinking " I can only see them 10 more times" You made me realize my parents are elderly and yesterday my mom wanted me to join Marco Polo (thing like snapchat) so she can see and chat with me at random times through out the day. I was annoyed (because I don't like looking at myself) but was doing it for her. But because of your comment I am happy I am doing it. And I do have DDD and MS so I can tell you. Both suck!!! Lol. And regarding time reversal. I swear MS makes it go...verrrrry....sllllooooww...at times. 🙄😂
Thank you! I'm a confessed dork of a dad. My daughter is married, lives 8 hrs from me but we talk at least once a day. I always am happy to drop whatever I'm doing to answer the phone! Yes DDD sucks. It's there but moderate. That was the problem. It wasn't until the orthopedic surgeon was getting concerned that he referred me to the proper neurologist. That's when the complete spine and brain MRI was ordered, revealing enhancing, non enhancing and black holes. The rest, as they say, is history! Thank You for the reply!
Ah yes, MS history is such a mystery. When did it get there? How? IDK sometime in the past. Awesome that you take the time to talk to your daughter. As a daughter myself I can tell you that it makes more of an impact than you know. I went in to a doctor because my DDD was so bad but the doc told me "it's MINIMAL ddd it shouldn't hurt that bad." That was the only time I grew an attitude. If I recall I actually asked her if she had ddd. Alas, she did not. She caught my point. I was diagnosed because I had tremors for years but it was a guy having a seizure in WalMart that got me to go get tested. I was the only one that knew (at the time) how to help. After the ambo showed up I knew I needed to go get check out. Sure enough I had lesions all over my brain. Years later I have it all over my spine, bone spurs and ddd.....oh sorry I meant "MINIMAL ddd"🙄😜. Apparently, I have an attitude too. Lol😇
Just keep communicating with your loved ones anyway you can. In my family, I have 1 first cousin left, other than my husband & my kids.
I’m finally reaching out towards my birth family. I’m adopted. Just waiting for the DNA results!
That's fantastic that you are doing that. I truly do pray the best for you and your family! I know those situations can be very difficult.
I absolutely will! I just joined Marco Polo. Hate recording myself but it became a blessing very fast!
You deserve to have an attitude! We all do! Your story is way too common. Mine started on midnight shift patrolling the desert west of Tucson in 2004. Waiting for smugglers, I noticed my fists would clench and roll in on their own. At that time I lost the ability to walk using night vision goggles. Id stumble and fall, constantly tripping and dragging my right foot. 2010…Lhermitte’s… “oh that’s odd” said the doctor! Back pain intensified. 2012 … hyper reflexivity, why I could out draw everyone at work! “Oh that’s odd” again. Things got worse from there. 2020… sent to neurologist…. Well it’s not DDD… but didn’t further exam me!!! 2022… ortho doctor finally says DDD could be getting bad enough BUT Lhermitte’s had him refer me to neurologist. Nov 2022, first visit with new neurologist…. In for cervical mri two days later. Telemed the following day. Enhancing Lesion on brain stem. Brain and Thoracic non enhancing plus black holes. Lumbar puncture ordered Jan 2023. Log in for Telemed and… awesome neurologist has lost his license because of personal use!!!!! I get Mayo lab results on my own, OLIG… 8 bands. Search for new neurologist…MS Specialist. Met her in March. Diagnosed SPMS. Put me on Baclofen… back pain gone. Screening now for Mayzent. Hope to start in next week or so. Omg. Sorry it’s so long but I needed to vent, I guess? I should write a book! Maybe a movie deal!
You know what I say. VENT MY DUDE VENT!!!!!!! That's what we are here for. I am more than happy to listen....Read in this case. Lol. The MS diagnosis procedure sucks. But the disease itself is hilariously stupid the more you think about it. (rather you want to think about it or not) but I can't help but laugh at it. I bounce into a wall either I or my husband are making a joke. "There's a wall there" " I'm just checking on my 'support' system".... Do it again "Saying hi to your old friend?" " Of course! Because I never miss it!"... "Omg, my feet are so cold they are hot!" (hubby feels) "They are cold." "But they are hot!" "That's cause your broken!" "Damn right I am!"
That’s so funny. Thank you. When my GF asks if I fell again, and I’m rolling on the ground, I answer with I was trying to fly but the ground got in my way! 🤪
Ha! Love it! You got to laugh. Don't get me wrong there are times I don't if the pain is really bad but that doesn't stop me from making a stupid joke. If my gastro gets bad my hubby worries so much he would forget to eat. So I finally told him he can't do that or else I get worried and that makes me sicker. "Besides if you lose more weight than me I'll be pissed."
so proud of you ...stay strong for you are still who you have been all of your life ,don't let MS stop you from being still happy and loving person...go girl and enjoy your life...
You are such a sweet kind person. You stay strong too. Rather you are surviving with MS or a survivors family member. We are all warriors. We will beat this war. One battle at a time because we have each other. There is so much strength around.
I used to hide it also but would get weird questions sometimes. If a had a limp or all of a sudden got so hot and weak I could not move. I have found it much easier to just tell people pretty early when I meet them. I tried to let them see that I’m independent first so no pitty or trying to help when I don’t need it. Led to more understanding when I have one of those random ms moments. I just can say bad day and move on. People walk slower for me those days. I use a brace now but usually at work it’s covered so not everyone knows but my close co workers do.
I had fallen so many times that getting the diagnosis was a relief. I had several people witness me fall or hear about it so I had no problem telling people I have it. I helped a friend move things last weekend. I couldn't help actually move much but I could drive the truck! I told her other friends I have it as I didn't want them to think I was being lazy by not physically moving things. They understood and I know they didn't think badly of me. I am not ashamed/embarrassed about my diagnosis. If people know, they don't question why you do, or don't, do things.
I definitely can relate! When ever I’m asked how often I fall I answer, it’s not the fall it’s how I land, I’m really good at landing. Already tripped once today, perfect landing. One of my maremma Abruzzese dogs was there to help me back up. I’m not embarrassed but I feel I’ve let so many down by not being a leader like I once was. Time will help that. Thanks for the reply. Stay safe!
The last fall I had was on our concrete driveway and I broke my wrist pretty badly. A plate and 10 screws later I was put back together!
I thought when I got my diagnosis " no one will ever know" it was 17 years ago I was still working as a letter carrier, and the day I got back to work after initial steroid treatment and final spinal tap the very first customer I saw came running to the door and said " Oh Robert I am so sorry to hear about your diagnosis" turns out he goes to church with my son's boss and my son told his boss because he was visiting me quite a bit. Well about half my route attended that church... So much for " no one will ever know"
small towns are like that too! Word spreads like wildfire! Btw I like your tag. Brings back memories of Bent Bike Motorcycles just north of Seattle!
I am very selective about who I tell and it’s been almost 6 years at first it was only immediate family but unfortunately my parents decided to take it upon themselves to share with their brothers and sisters, so then everyone knew l but nobody talks about it. One of my younger cousins who always looked up to me growing up (and even now) and his wife just stared at me during a family get together and neither said anything. I think they didn’t know what to do or say. I honestly don’t even think they know what it means or obviously how to wrap their heads around it. All of my other cousins and aunts and uncles didn’t treat me any differently except the one uncle who wouldn’t leave my side (he was a teenager when I was born so he was almost like an older brother when I was a kid). It’s funny how everybody reacts differently.
Seeing I was struggling with health issues for over 30 year, probably would’ve provided an answer for everybody if I just fessed up and told them once I was dx. I think I was afraid that they wouldn’t understand and that my job would be to explain MS to them which I was not in a space to do at the time I was trying to deal with it myself with my own husband and children..
It’s your business who you tell and your reason why only you can make that decision. I actually feel kind of betrayed that I didn’t get a chance to tell everyone on my own terms in my own way.
I had many thinking that I had a brain tumor. I went from riding my ultra light road bicycle to falling out of bed thinking I’d had a stroke while 💤. Hubby took me to hospital and 6 hrs later. No answers! Recommended seeing a “Nuero.” First one gave me nothing really. So I called the Medical University in a large city that had always been our “Go To” that should of been our first choice. He laughed at the fuzzy quality of the first neuro’s brain scans & said he would not of diagnosed anything from those scan. A few months later, I had my diagnosis, how many white spots & so much detail. He’s still my Nuero & we even do Zoom meetings.
I didn't have a problem in the beginning, because for me it was a relief to finally find out what was wrong. I was happy about the diagnosis and wanted to share my joy. It was the varied reactions that caused me to take a step back, so now I pick and choose who I tell.
I can relate! Two decades of ‘disk degenerative disease’ and the foot drop a result of an ankle reconstruction when I was 17, to finally have a diagnosis, even as bad as it was, was a relief. All of my friends and family have been incredibly supportive, I just feel I have failed them. I hope you have positive support! Thank you for the reply!