Coming Out About Your Diagnosis

[Pistachio]

How did you tell others about having MS? Or, did you tell people at all? I am torn on this issue. I have pretty much known, and the neurologist highly suspected, that I had MS for well over a year now (probably closer to 8 or 9 years, in reality). But the recent lumbar puncture sealed the deal, as they like to say. The only person who knows is my husband. I have two kids - 22 years and 18 years old. They do NOT know. I didn't see the point in telling them and worrying them when, one, I didn't have a 100% knowledge that I DO have MS. And, two, I am not outwardly suffering from visible illness. Yes, I have my moments but I am able to mask very, very well.

Coming out to my kids is easy because they are my kids! But how do you tell others? Do you broadcast it? Do you invite everyone over? Do you just tell people one by one when you see them next? Or, do you not tell them at all until it naturally "comes up" or your symptoms become visible?

I am torn on this issue. In one way I don't want anyone to know. I don't want people sitting in our friends' circles at a get together saying, "Oh, dear, have you heard about Pistachio and her MS?". Or, the opposite, "You are such a warrior, Pistachio, because you go out and ski The Rockies with MS". Basically, I don't want the attention positive, negative, or otherwise. It's not my style. I have always been this assertive, "get it done and don't complain/suck it up" type of person. So to tell others that I have MS affects my identity a bit. I do not want to be pitied or hero-worshipped.

I want to say that I don't mean to offend anyone. I apologize if I have. I understand how fortunate I am to (still) have the option of telling others. But I am struggling with this.

How do you remain your authentic self but not be transparent about this? I am a, "what you see is what you get" sort of person. I don't mince words, I don't filter my thoughts. So this seems like a lie to both tells others and not tell others. It's like I lose either way.

I am looking to all of you to share your experience and the wisdom that comes with that.

Thank you, in advance!

[Jules A]

My close family and a very few friends know. In the very beginning I was convinced if I talked to enough people I would find someone who had the answer on how to fix this but in hindsight that wasn't a great idea as it left me feeling vulnerable long after I realized no one has an answer. I am still working and have no intention of putting a bullseye on myself in that arena so I will not disclose until I have to at which time I may just go on disability or retire as I'm in decent shape financially and only planned on working another 8 years anyway.

I would encourage you to consider discussing with your adult children for many reasons but particularly the familial implications however there is no one size fits all so whatever you feel is best for your situation will be best for your situation.

[KoKo]

Hi Pistachio!

I am torn on this issue. In one way I don't want anyone to know. I don't want people sitting in our friends' circles at a get together saying, "Oh, dear, have you heard about Pistachio and her MS?". Or, the opposite, "You are such a warrior, Pistachio, because you go out and ski The Rockies with MS". Basically, I don't want the attention positive, negative, or otherwise. It's not my style. I have always been this assertive, "get it done and don't complain/suck it up" type of person. So to tell others that I have MS affects my identity a bit. I do not want to be pitied or hero-worshipped.

Once you get to the place where you realize that you can't control what others think or say, and you are not affected one way or the other by what others think or say, then you can be authentic with disclosing or not disclosing, as you feel appropriate.

You didn't mention if you are working? That might call for a different mindset.

My symptoms were mainly motor symptoms from the get go, and very visible (uncoordinated walking, limp, balance issues, uncoordinated arm/hand movements, dropping things, falling down, etc.).

For me, there was no hiding the diagnosis at work, or otherwise.

My place of employment was good to me, and allowed me to work a light-duty position for 5 more years after diagnosis.

[pennstater]

I told my immediate family and my siblings told their kids. I also let them know they could tell their inlaws, as family gatherings usually included them. I didn't want people worrying about slipping up and accidently saying something, since chances are they would ask how I was feeling.

I told my close friends, as they knew I was distracted. I only told my work manager when I hit a rough stretch. When I needed an accomodation, my bosses boss was involved and HR. I also told my teammates, as I didn't want anyone to perceive my boss was showing favortism. I also wanted them to know what a great boss we had and a good company, should they ever need it. Towards the end of my career, I didn't care who knew.

Now, I am open about it with people I see on a regular basis.

What I have found is that if I don't make a big deal about it and talk about it as just part of my life, most people follow your lead.

As for your kids, I would think about what you want them to know about MS when you initially discuss. Chances are they will have some fear of it.

[Pistachio]

You didn't mention if you are working? That might call for a different mindset.

I work for my husband. I run his office. He is a chiropractor. My employment is not affected.

[KoKo]

I work for my husband. I run his office. He is a chiropractor. My employment is not affected.

Oh, that's right! Sorry I forgot about that, Pistachio.

[palmtree]

This is an interesting question and not easy to answer. Right after I was diagnosed someone on MS World wrote, “once you reveal it you can’t take it back.

I asked my son and his father to come over and said, “I got an MRI back”. My brother in law had just died of cancer so they were both terrified. They were kind of relieved that it was “just MS”. But my son cried because he was studying about demyelination in PT school.

I invited my mother to the hospital when I knew it was definitive. She was in denial about the validity of the MRI results at first. Friends it has been harder. I told my best girlfriend and she has been very supportive. But I have a dear friend from college and I talked to him on the phone for an hour and couldn’t get the guts to tell him. Maybe I didn’t want it to be broadcast. He just wrote me yesterday and I still didn’t say anything. I told my cousins and they were wonderful.

But with the rest of the world I have been kind of private. Some of my swimming friends abandoned me when they found out.

i guess I am very selective about who I tell. Not everyone needs to know nor do they care to. I think if I was still working it would seem more important to keep quiet.

The reaction that I hate is sentences that start with. “You should...” Everyone has a diet or a cure. I know they are trying to be helpful but there aren’t enough hours in the day to fulfill everyone’s “you should”.

There is no rush to reveal it but I think it creates a barrier between me and and the other person when I am hiding something so big.

[loopey]

I was with my son when I was dx and I started to cry; I feel really bad that he had to see that. I told my family and reminded them that I was in pretty good shape for my age. It was important for me to point that out since my mother had MS and had been in a wheel chair at a young age. My children never saw her before she was in the wheel chair. When I started to use a cane friends and acquaintances would ask me about it and I would tell them then.

My favorite response was on a busy street when an acquaintance asked about the cane. I told her I had MS and she shouted out the loudest profanity. It made me laugh!

[Jules A]

My favorite response was on a busy street when an acquaintance asked about the cane. I told her I had MS and she shouted out the loudest profanity. It made me laugh!

Now that's my kind of friend!

[oceanpride]

Other than close friends and family I wouldn’t bother telling anybody. I’ve found that half the people don’t care and the other half are glad it’s you and not them.
For me with very visible symptoms I just say bad leg or bad everything or bad back or kicked by a horse or anything but MS.
For the most part only people with MS really know what it is anyway. Like what was said on here “ you don’t get it unless you got it “

[Mamabug]

My symptoms came on with a bang (stroke-like symptoms and ER visit my ambulance in the middle of the night). This was followed by 3 months off of work, lots of PT and learning to walk. Then followed by another major flare and ambulance ride to the ER and 4 or 5 more months off of work.

For me, there was no hiding it. Diagnosis followed more than a year later.

[palmtree]

I was with my son when I was dx and I started to cry; I feel really bad that he had to see that. I told my family and reminded them that I was in pretty good shape for my age. It was important for me to point that out since my mother had MS and had been in a wheel chair at a young age. My children never saw her before she was in the wheel chair. When I started to use a cane friends and acquaintances would ask me about it and I would tell them then.

My favorite response was on a busy street when an acquaintance asked about the cane. I told her I had MS and she shouted out the loudest profanity. It made me laugh!

I hope the response of the acquaintance on the street was a supportive profanity. If it had not been that would have taken amazing resilience to laugh.

[loopey]

The profanity was definitely supportive!

[Mamabug]

My favorite response was on a busy street when an acquaintance asked about the cane. I told her I had MS and she shouted out the loudest profanity. It made me laugh!

Lol! Good friend.

[Jennaly16]

Happy Friday!
I am very open about having MS but i don't "wear it on my forehead". When i found out my mom was with me. She cried so hard that when i went in the infusion room for steroids they thought she was the one just diagnosed.
I told my boss immediately as i work in health care and support people with disabilities. All of my family knows but more because my mom informed them as i had a two year old at home and she thought i may need some help at some point.
I don't hide it but i also don't flaunt it. If you met me you would never know until I told you and i use it as an opportunity to teach people. I had one person say "aren't you sick? How do you come to work everyday?" in which it was a teachable moment that MS is not a sickness nor is it a life stopper.
I also think it depends on your support system. i have a very strong support system therefore i was ok with opening up however others may not have the same. Personal choice for all!