dilema with MS disclosure - Multiple Sclerosis Message Board

Rem4 · 10-03-2007, 10:29 AM

Hello again,
As I posted before I was just diagnosed with MS, it is still overwhelming, and hard to accept. In the first few weeks when it was only suspected that I have it, but deep inside I knew I have it and when it was finally diagnosed by a specialist, I could not talk about it with my husband without crying and being upset. I could not even make the call to the MS society. The specialist put me on anti depressant called Lexpro and now I can talk about it with out crying and it almost feel as I am talking about someone else.

Here is my dilemma, my husband and my 2 sons (28, 26) know about it but nobody else. I told them that I am not ready to disclose it not even to my close family (parents, brother, sister in law etc) nor to my close friends. I thought once I start the injections (which I have not still not sure which med to go on) and I will master it I will tell my parents but will ask them to keep it a secret. I know that secrets are “dangerous” once you tell one person you have no control over the secret, a lot of time a friend will tell you I have a secret I was told not to share but I am only telling you…… but I do trust my parents and hope that they will respect my wish. I know that they will wonder why I am not telling my brother, but at the moment I am not ready, I cannot expect emotional support and I know he will tell his wife and from there I don’t know where it will go.
At the moment I think I will tell my parents soon, but I do not want to tell friends and others. Any suggestion? Anybody on this board has experience like that or advise? I would appreciate it, at list here I feel safe and I know I am not alone.

MSJayhawk · 10-03-2007, 11:19 AM

I tell everybody I know. That way there are no secrets. In 1982 I had to disclose to the military my condition. I have mad a point to tell anyone who works closely with me or is a friend. That way, when I get tired or need to stop, they understand and no feelings are hurt. It was and is a liberating feeling and relieves stress. Keeping your secret can place unhealthy stress on you.

It is, however, your personal choice. Do what you feel is best for you.

mitch512u · 10-03-2007, 11:22 AM

Rem4,
If you aren't comfortable with telling anyone, don't. Do you think your friends and family will think less of you if you told them? What ever your reasons I'm sure that they are valid. With that said I hope it's not an issue of shame. There is nothing to be ashamed of with this disease. It's not like you did this to yourself, it was just the luck of the draw. Something you may want to consider, in my opinion, is that by keeping this a secret you may miss out on the support your TRUE friends would be able to give you. I know that in my case my friends and family have been tremendously supportive. One other thing to consider is just how long you will be able to hide your symptoms. Remember that stress can trigger flareups and that keeping secrets can prove to be stressful, so keeping the secret might prove to be counter-productive. Just my thoughts, take care of yourself. Mitch

LISAMCGEE · 10-03-2007, 11:32 AM

Wow - I felt like I wrote your post! Yes I feel the same exact way! I got my dx in July 2005 and I am still in the denial stage. Obviously my DH knows and we told his parents and mine when it was all going down. His mother went and told a ton of people and I was very upset about it. I have since made sure she doesn't tell anyone else. (now I know I can't trust her). At the time I had to tell my then boss because I was out of work alot thru the dx stage, but i have since moved to a new job in the same company (been in new job 1+ years) and nobody over in my new dept. knows. I have to go 2x a year for MRI and follow up appt's with my neuro but I never reveal where I am going or why I need the time off. I figure if it ever comes to the point where I have to tell her I will, but in the meantime I am healthy and have symptoms that are visible to anyone else. I don't want anyone feeling sorry for me and I just want to pretend it doesn't exist. So far so good for me. I was on Avonex for the first year but have since gone off of it because we are trying for a baby. But I plan on going right back on it after that. Its a personal decision and to be honest, it would be awkward to have to tell someone (I don't want any attention drawn to my "disease"). I mean really who's business is it anyway? I have all the support I need from my family (I even keep it from my 8 year old son, he wouldn't understand anyway). Good luck to you - its a hard road emotionally and mentally. Do whatever you feel comfortable with. There is no wrong answer here.

kimpossible67 · 10-03-2007, 12:16 PM

It is your choice what you decide to tell and not tell. However, remember how tough it was for "you" to deal with the diagnosis, the ones that love you the most (parents, siblings) it will also be tough for them to deal with. Often, we need to vent to those closest to "us." It was hard on my parents, I have a cousin that has had MS for 15 years and I knew how upsetting it was for my parents on her behalf. Imagine their horror when their own daughter got it too. I don't like secrets nor having people keep them. I come from a long line of secret-keepers and I hated it. I'd rather be honest, if you can't deal with it, too bad. So far, I haven't noticed anyone treating me with pity and/or sympathy, they are just more thoughtful to how I'am feeling. Good luck in whatever you decide