This Is MS Multiple Sclerosis Community: Knowledge & Support

[jasonc]

did you tell everyone as soon as you were diagnosed? I'm still debating if I should. Can someone help me?

[adjanimals]

For me I did. It helped explain some of the problems I was having. Stumbling, slow walking, walking into the corner of a wall, just various things. My friends were real understanding. I also told my employer. Some say not to but I felt it would protect both of us and they were real supportive. I was Dx in 1993 and since then I have been at 3 other companies and they had no problem. Now I work as a computer operator so it would depend on the type of job you do. But I recommend telling.
Good luck to you.

[SlowI]

I do think that adjanimals has a great point. The answer may be clearer if your symptoms are obvious. The challenge in my case is that I have no current visable symptoms. My choice;
1. I haven't told very many people. I have a career issue, so I have not said anything to anyone even remotely related to my work. In my case, I have a contract that spells out severance for disability, but I am very capable, and am not in the least affected today, so I'm not talking at the moment.
2. I did tell my family(brothers and sisters). I'm not convinced that was the right thing to do. One decided that this was news that everyone needed to know, even though I asked that it be held confidential. NOT a great result.
3. I ask myself "Why would I tell _______". I find that most don't really know much about MS, and don't know what to say, so it doesn't FEEL very supportive. Maybe it will someday, but not today.
4. By all means, tell someone that you think will not run away, but will stay to be supportive - after all, relationships are what really matters in this world, so for those you hold dear, and that hold you dear I'd tell them. Maybe I just don't have too many in that category - but would like to develop them.

I would love to hear your experiences (and those of others). In one reference, I heard a prior MS'er say that the best response they'd ever heard was "That really sucks". Obviously there's nothing the listener can do to change your events, but sympathy of the support form makes all the difference.

One last note (sorry to be wordy): This weekend I ran into an old college friend (from 20 years ago). His wife has just been diagnosed with inoperable pancreatic cancer. Put things in my life in perspective. Made me think about what to say since I'm a bit more sensitized to the issue today.

Best of luck with your decision, and your life with the MonSter. If there is anything I can do, or assist with, please feel free to private message me.

Regards,
SlowI

[carolsue]

I was "out-ed" right away. Although I have no outward symptoms, let's just say it's a small town. Everyone knew something serious was up and so when people asked me how I was, I decided to tell them. I had the feeling they all knew anyway. I'm a fairly private person, so this was quite awkward for me, but I think it would have been worse to try to keep a secret, all the time wondering who'd told whom already. So maybe I'm serving as an educational poster child about MS!

My husband had a real need to tell friends and relatives right away, so I let him. The diagnosis was hard on him, too, and he needed support.

A few months after my diagnosis, I remember wishing no one knew because I was still getting used to the idea of having MS and it was difficult to answer all those "how are you feeling" questions. I'm used to the idea now, and those questions have gotten far and few between.

It does help that I have a very supportive work environment. If I didn't, I probably wouldn't have been so open.

carolsue

[CCmom]

When my 16 year old son first became ill 3 years ago, someone took the option totally out of our hands and announced it at a church service and via email to all of the church members. (The largest church in our area, naturally.) MS had just been mentioned, and we were still battling rumors that he had brain cancer - we didn't even have a confirmed diagnosis. We live in a very small town, so word spread like wildfire. I had quite the temper fit and insisted that the church retract their statements, but the damage was done.

It wasn't that I intended to hide anything from anyone, truly. But I did want it to be my son's decision as to when and how this was done, and who would be told. Also, I would have appreciated it if we had been allowed to get a concrete diagnosis and deal with it ourselves before someone took control away from us. I have never been so angry in my life. At this point, we had 3 different diagnosis' for my son who was still extremely ill in the midst of an exacerbation. We were not members of that church, and this news was spread by pure speculation on one of the member's parts. MS had barely been mentioned at this point, and I have always felt that we should have been allowed to decide who would be told. I still get angry thinking about it. The horse was out of the barn before we even knew what color it was!

As for reactions of those in our lives, it's wonderful the way my son's friends never even blinked, just continued their friendship and stuck right by him. Family, on the other hand, was a different story. Our family is very small, not too many of us. My mother passed away shortly after Colby's diagnosis, but she was the only one who treated him normally. My father has since excluded him from yearly Florida trips and never takes him out on all day outings like he used to. He takes his other grandson (who - by the way -has Down Syndrome) but my son is left out of everything since his diagnosis, even though since he started LDN, you would never even know that he is sick.

No one can tell you what to do. You know the people in your life better than anyone. I have a friend who is 44 years old and was diagnosed with MS the same time my son was, and he told his employer, and wound up losing his job due to cognitive problems, a job he had for 15 years working as a producer for a t.v. station. They started building grounds for termination the week he told them of his diagnosis, and he'd had perfect yearly reviews up until then. Another friend of mine was diagnosed within the last year, and she told a few people who were really close to her up front. Some have stayed at her side, and some have disappeared from her life. She stopped telling people except for a "need to know" basis. I wish we could have done the same.

Take care of yourself! These message boards can help for support so very much. But it's always nice to have someone you can sit down over a cup of coffee with and talk about what's really going on in your life. Meanwhile, you will make good friends here who will know exactly what you are going through!

Kim

[Jill]

i'm recently diagnosed and i have told the people closest to me. i felt i needed to because i have been so ill over the last year and 8 months and had so much testing done, friends/family asked if they found out what was wrong. many of my symptoms are outwardly seen, so i figured it would be helpful if people knew why i was having so much trouble. most people have been supportive, but there have been a few who have suddenly become "busy". oh well, weeded out the fair weathered friends. i think the decision to tell people is very personal and also depends on the personality type of the person you're considering telling. follow your heart and intuition.

[kspackrat]

I am not good at secrets and I feel better having people know than wonder what is wrong w/ me if I stumble or slur my words or am having a bad time and need to use my walker or scooter. My boys are with me pretty much 24-7 and I also do not want them to feel uncomfortable about my MS. If I act like it needs to be a hidden secret thing then I worried about how they would think about it. I think it helped my oldest, who was 5.5 when I was diagnosised and knew me before MS and was effected the most by the changes in me and my abilities. My youngest was 1 at the time so he did not go thru the same things or remember me differently.

I find that most people who have questions usually ask if I am ok to talk about it or answer their questions. Sometimes people have someone in their family who is having problems or just diagnosised with something and they just want to know what that person might be feeling.

I also had to apply for disability, this I do not share with everyone, it is a little harder to explain and not get the looks about. On the other hand I have helped some people understand how the system works, it took me 4 yrs thru the SS systems to get it. And also help people understand that people do not have to be bedridden to deserve disability. I have talked to other women with MS who tried to work at long as possible and worked against their MS till they were so disabled their quality of life was poor. It really helped to have them say don't give up, save your energy and life for yourself. I have also had conversations with family memebers of others who needed to understand the things a person thinks and feels when they are applying for disability. It is a very stressful thing to do, and it is hard to discuss with people you love and are close to.

I can only help I have helped at least one person with my willingness to talk about my MS and my disabilty battle.

[LarryLDN]

Everyone around me knew what I was going through from 3/02 through 5/20/02, so they knew I was going for MRIs in June, and so they all found out the results once I found out.

Like adjanimals, when I started learning what MS can cause, I found it was responsible for most all the criticism people used to shove down my throat.

My MS DX was an answer to many years of strange happenings. A lot of things started making sense, and now I had ANSWERS for when they ever came up.

[BeckyLA]

Just about everyone in my family, all my friends, and everyone I work with knows. I didn't really plan it that way, but my second relapse caused me to drag my right leg around for a few days, and the then I went on solumedrol treatments to fix that, so I had IV access on my right hand. Being pretty self-aware, I know I'm a terrible liar and would never have been able to come up with cover stories. Plus, I live in southern Louisiana, where nobody gets to keep any secrets, so I pretty much gave up trying. Fortunately, everyone has been really supportive. I realized later that I probably should have told my boss what was going on from the beginning. I think he was starting to wonder about my twice-a-week doctors visits.

[OneEyeBlind]

I did tell everyone close to me. Even the ladies that I work with. It was easier then trying to hide the fact that I was having to leave work for tests and such over the past year.

They were very excepting of it. Of course I have been here for 5 years and have built up a friendship with them. And I work for a school district so they already have to comply with accessability issues and such.

[Stoli]

Majority of my friends know. Also my family including 5th cousins twice removed, thanks to my mother. Once my mother found out she used it for her own sympathy ( I had to ask her to stop telling everyone), probably her way of coping.

Anyway my mother's big mouth helped it spread and I still get the pathetically condescending "how are feeling dear".

My previous boss knew but he retired and I think ??? (bloody short term memory) at the time I mentioned it to the man that is now my current boss. And most of my other work colleagues know (I think). The reason I am not sure is that the period of dx is all a blur and I only work with men: and therefore they would self implode if they were to ask me how I was - consequently no one mentions it.

I would like people to know - not for sympathy but for understanding - i.e. don't organise a lunch at the top of 3 flights of stairs with no option of an elevator. And don't expect me to keep up with you - I'll get there eventually have a cold drink waiting for me.

Ms Stoli

[MOMTO3]

hello all,

nice to hear other peoples experience with telling others, as suprising as this may sound, i still havent told my children. i was dx'ed 6 yrs ago, and most of my symptoms as painful or agitating as they maybe, can be hidden. it is mostly numb hands or feet. it was diffucult to explain when i had to be hospitalized, and as my feeling i did not lie, i told them it was because of problems with my hands and i needed medicine from the iv, which was true, i know this sounds weird, but recently we had lost our house and had to move, and i just feellike i want to keep the bad stuff away from my children and protect them as long as i can. i have 3 children, 11,9 and 5. the only people whoknow are my husband my parents and my aunt(which my mother told for support i guess) i havent told anyone mostly for the reason of, the pity looks while they say how are you, in that condesending baby voice. or like my husband does, he is always dont do this and no no let me do it. i had to explain quite a few times, how awful and useless that made me feel, i had to promise him that if i needed help i would ask. i have always been a very self sufficent person, but as time is going on i realize more and more my limitations. i know i can not clean and clean and expect to feel fine afterwards. i must slowly take my time, and takes breaks frequently. sorry now i am rambling off topic. as far as the main question, no, noone outside of immediate family, knows and i guess as long as i can keep it to myself, i will. i am not saying i feel it is wrong to tell everyone, or right to tell noone. i feel it is totally up to how you feel. whatever makes you comfortable, and again i am glad to see others experiences with this. and like to thank all for this board, it has helped me tons