Reactions when you disclosed your diagno... - My MSAA Community

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Reactions when you disclosed your diagnosis

greaterexp
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My daughter disclosed on social media today that she has Charcot-Marie-Tooth Disease. All but one response was very supportive. I’m glad she shared this so she could get some much needed support, so more people are aware of this incurable disease and the need for research for a cure, and to hopefully let people know that she needs some real help sometimes.

What types of responses did you receive when and if you told others about your MS?

48 Replies
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Jesmcd2
Jesmcd2CommunityAmbassador

I'm so sorry to hear that about your daughter greaterexp 🤗 and I'm so glad that she received the support she did on social media.

~May She Always Be Wrapped In The Wings Of Angels~🤗💕

greaterexp
greaterexpCommunityAmbassador
in reply to Jesmcd2

Thank you so much.

Mostly supportive, sometimes shock and awe, and I’ve never hid it from anyone. My friend had CMT 😔 but he’s managing ok so far. I’m glad she was open about it, the disease is burden enough!

Most people had no idea what ms was, like me total ignorance. Maybe by getting it, more people are now aware of it. Maybe some good will come out of your daughters ailment, God works in mysterious ways, Blessings Jimeka 🙏

greaterexp
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in reply to jimeka

I thought more people knew at least a little about MS, but so many people asked me what it was and asked if it is fatal. Several just didn’t know what to say or quite how to respond, but I have a lovely church who has been very supportive and understanding. I wish it were that way for everyone.

I received some support, some shock, some that thought I should go on disability right away :( I'm glad your daughter received some support after revealing her diagnosis.

Hugs,

Jessie

I am sorry to hear about your daughters diagnosis.

My husband and son have Charcot Marie Tooth (CMT) but I know that there are different genetic forms. It runs in my husband’s mother’s family.

greaterexp
greaterexpCommunityAmbassador
in reply to Morllyn

I'm sorry to hear this. It's such a strange disease, and like MS, affects everyone differently.

Morllyn
Morllyn
in reply to greaterexp

My husband has had it since he was a young child and had multiple surgeries on his feet. He has worn braces for many years. Our son was diagnosed at 12 and is now 48. He has had problems with his feet for maybe 20 years.

I'm sorry your daughter is going through a hard time.

Best Wishes,

Leslie

greaterexp
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in reply to lbenmaor

Thank you, sweet Leslie.

lbenmaor
lbenmaor
in reply to greaterexp

You're Welcome.

I was diagnosed in 2014. Of course I told my husband and he was with me every step of the process of being diagnosed. The only other family I have is in Georgia. When I told my brother and his wife, they were shocked. When I told my adult niece, she started crying. At that time I only told a few close friends. Most of them were shocked, but then supportive. I felt very uncomfortable that other people were feeling upset. I have always been the one to fix, to solve, to listen. Asking for help is contrary to what I've always done, but I know that part of a close friendship is to be open with each other. I still have friends who do not know.

greaterexp
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in reply to elaineinqueens

Thank you for sharing about your experience. I understand that feeling about needing or asking for help. It’s really difficult for most of us.

I also wanted to add that I'm glad your daughter got so much support when she posted about her disease on social media. As for the one that was not supportive, unfortunately things like this sometimes show us who our true friends are and are not!

greaterexp
greaterexpCommunityAmbassador
in reply to elaineinqueens

That is surely the truth. Some people I thought would be supportive distanced themselves right away. That surprised me, but true friends are still there.

I’m so sorry to learn your daughter has this illness. I’m glad her reveling it on social media was met with mostly positive responses. It’s great that she will have that support.

My symptoms have always been hidden unless you know what to look for which most people don’t. Consequently, I was able to take my time telling people even in my inner circle. I did this for many reasons one of which was because I got tired of dealing with the reactions of shock and the comments like “but you look so good” or “you seem normal to me”. Even now I get those comments when people find out I was diagnosed over 20 years ago.

greaterexp
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in reply to Raingrrl

You obviously must write your book about how you’ve done well enough to fool so many people. Seriously, we do understand how difficult those invisible symptoms are.

I got no support as u may recall from past post. So now I don’t say anything about it. I just say I injured myself and keep it moving

greaterexp
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in reply to rjoneslaw

That saddens me. I hope you will be exposed to really kind and generous people who will support you unconditionally. Just one friend like that can make a world of difference.

I did tell this one guy I was dating at the beginning because he asked why I was going to the dr .I have no clue why I just came out and told him. I knew he would understand because his mother had dementia. He was fine with it but I messed that relationship up royally when I started having symptoms and now he refuses to speak to me.

Glad your daughter got so much support.

Most people where I was working at the time of my diagnosis noticed my cognitive and memory issues long before I did. They were relieved when i told them I had MS. They thought I had a brain tumor or something aweful like that. Then some of them asked me what MS was. A few others got me in contact with other people they knew with MS. One of my coworkers his wife had MS as well and she gave me all kinds of websites to checkout for good information about the disease. She also gave me really good tips on how to spot BS as well. My family has also been supportive if not over dramatic about it.

Only one person jumped back and asked if I was contagious. He was relieved when i told him I wasn't.

greaterexp
greaterexpCommunityAmbassador
in reply to Peruzzot

There's always one! It's great that you received so much encouragement. God bless those coworkers who were concerned about you. It would have been tough to have been in their shoes, wondering and not wanting to hurt your feelings. No wonder they were a bit relieved to learn the reason behind it.

So sorry to hear of your daughter's diagnosis. How very brave of her how she's handling it. I told very few people of my diagnosis. At work it was easier to just claim a vision problem. Even when forced to go out on disability due to the extreme fatigue, all my paperwork stateded was "a medical condition". Only my family knew everything & they are my support system. Hugs & prayers for your daughter...

greaterexp
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in reply to 2littletime

Thank you so much. I know she waited a while because she didn’t want to be identified by her disease. I think most of us can relate to that. “Oh, that’s the girl with ——- disease.” She also feared looking as though she were seeking sympathy. Most of us can relate to that, too.

I’m so glad when I hear that people have good family/friends who are supportive and helpful.

I’m sorry about your diagnosis, but happy that she is being supported. I have honestly received nothing but support from friends and family since my diagnosis, though for them, like us, it’s a learning process. Until someone actually has MS, I don’t think anyone really “gets” what it’s like to be us. They try, and that’s all I can ask.

greaterexp
greaterexpCommunityAmbassador
in reply to Texandyroe

It’s such a blessing when others try to understand. The first person my daughter told outside of family went home and immediately looked it up to learn more about it and to see how she can help. What a treasure!

okay I will bite, what is it?

greaterexp
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in reply to RoyceNewton

I'm not sure what you're asking.

sorry what isCharcot-Marie-Tooth Disease?

greaterexp
greaterexpCommunityAmbassador
in reply to RoyceNewton

It's a fairly rare (2.6 million worldwide) progressive neurological disease that is inherited. There is no cure and no treatment. As with MS, each case is different. Most of her symptoms right now are numbness of hand and feet and neurological pain all over her body. She is losing function of her hands and has a little trouble with twisting her ankles when walking. It has progressed rapidly since this last pregnancy. Some people never know they have it, but for others it is debilitating. It's the "most common neurological disease no one has ever heard of," as her doctor put it.

Thanks for asking, Royce.

thank you, that being the case may best to her, I only have RRms, she seems to have a much harder road to travel, again my condolences

Sorry to hear about your daughter. I didn't know what Charcot-Marie-Tooth Disease was I had to look it up online. And it is something else. After reading about the different symptoms, I was shocked. I didn't know. It is good she is telling people about it on social media. When my doctor told me "it's your brain" that is causing my problems, I didn't tell anybody. My husband knew and I told my mother and that was it. But after learning more about MS and chatting with other MS warriors , I have told everybody. It is no secret with me. I tell it. 👍

greaterexp
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in reply to Cutefreckles72

Thank you so much for caring.

Sorry to hear about your daughter. I am one of those that didn't even know it existed. I did look it up online & felt very grateful that I only have MS. I'm glad she is getting support as we all know how important it is to have someone who understands.

greaterexp
greaterexpCommunityAmbassador
in reply to hairbrain4

Thank you for your kind words.

Whew! I'm wondering how SHE took the news when the doctor told her? And you, as well! Wow. That's a hard one to hear.

Not many people even reacted to me when I told, or tell them. Even my own family. I believe it's in their mind and if something comes up that wears me out quickly they accept it. I don't think anyone researched it to see what it means.

greaterexp
greaterexpCommunityAmbassador
in reply to mrsmike9buffering

I think was initially, she was in shock. When she mentioned the numbness some times ago, I begged her to see a neurologist. I don’t think she saw it as anything serious until she was given a provisional diagnosis. I naturally worried about MS. She was referred to a specialist, who told her it wasn’t CMT, so she and her husband decided to go ahead with a very much wanted 3rd baby. It wasn’t until she was pregnant that the actual genetic testing was done and showed CMT. I think it was pretty hard on her, mainly because she fears for her young children.

I hate that she has this and am devastated that I live so far away, that she is progressing rapidly, and I can’t be there to help. It reminds me how helpless our friends and family can feel about diagnoses.

This will be one of those times when you WISH she had MS and not this other disease. How hard this must be for both of you. I am so very sorry for both your pain.

greaterexp
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in reply to mrsmike9buffering

They are both unpredictable, so I hope she will stop progressing so quickly.

Absolutely!

IHugs to your daughter.:)

As for me, many have expected to see me on the Jerry Lewis Telethon.

greaterexp
greaterexpCommunityAmbassador
in reply to falalalala

Haven’t you been on yet?

Not yet! :)

Prayers to your daughter! I have only told my close family

I had nothing but support. Everyone was there for me with compassion and empathy.

greaterexp
greaterexpCommunityAmbassador
in reply to cljones

That’s marvelous. I wish that could be the case for everyone. I’m sure you treasure your family and friends.

cljones
cljones
in reply to greaterexp

Yes I treasure them. They are my life and I don't know what I would do without them. My congregation is so supportive. I have truly been blessed by Jehovah God.

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