There are many things this can refer to. Do I tell my employer I have MS or not? Do I tell the guy I'm dating that I have MS? Do I tell my loved ones I am having an attack? It is this last question I want to focus on.
I go through SOOO many debates over whether to tell my husband, my parents, my friends that I am having an attack or I am not feeling well. Sometimes it is easy for me to tell them, other times it is not. I fear that I will worry them. I fear that they will treat me differently. I fear that they will not let me do what I want to do.
First fear - they will worry. I hate to worry someone else over me. I try to do everything by myself. Do you need help with those bags? Oh no, I'm fine carrying the 35lb bag plus the 35 lb kid on my hip. So to admit that I feel weak or I am having an attack is hard. Now when I had my one MS attack where I had no strength in my right side, I had an eye patch on so I would see only one thing instead of two and I had an upset stomach from the imbalance, I really didn't have a choice to tell. I remember telling my mom and sister that they really didn't need to come down and help, but they did. After I had gotten better, my sister the nurse said she was so shocked at how bad I was and couldn't believe I had told them to stay in PA. My mom tried to give me some chicken soup, her cure -all and I ate ½ a bowl and it stayed down. She kept urging me to eat more and I told her the ½ bowl was the most I had eaten in 3 days. So I had them worried and I really didn't want them to worry about me.
Second fear - they will treat me differently. As I said, I try to do everything by myself and if I tell someone I am not well, that person more times than not wants to do something for me to help and ends up treating me differently. When I was first diagnosed and was very asymptomatic, this was one of my biggest fears. I did not want to be bypassed at work because my boss thought I may not be able to handle the stress. I did not want to be told I couldn't do something because I had MS. I wanted to be treated like everyone else because if it weren't for the chronic disease, I would be like everyone else.
Last fear - they won't let me do what I want to do. I loved Wonder Woman and the Bionic Woman growing up. I am invincible so no one can tell me what I can or can't do. This fear is very real to me every time I feel a symptom coming on. A real example happened to me a few weeks ago. I had been having some cloudy vision in my right eye. If I close my left eye, the bottom half of what I was seeing had a film over it. I could still see, but it was just a little gray. Well it started the last Tuesday of September or thereabouts. Not too big a deal except that I was walking in the MS Challenge Walk - 3 Days & 50 miles that upcoming weekend. Now if I told my husband, there was a chance that he would say to not do the walk. And if I told my doctor, I would have probably been forbidden to do the walk. But I trained way too long and raised too much money not to walk, so I did. I did tell my husband who thankfully realized I would not push myself beyond where I was comfortable. And I was fine the whole walk.


Hi Kristin: I puzzled over this same question and I share my experience and outcomes in my blog dated August 27, 2007 at http://disablednotdead-anne.blogspot.com. Click August 2007, then To Tell or Not To Tell.
Just another person's experience to share,
Anne
Thanks for the link. I read your post and am sorry to hear of the friend who stopped being your friend due to your diagnosis. I have not had any experiences of people reacting negatively although I do wonder sometimes if the disease was a factor in my getting downsized at my previous job. But I also wonder if my being a female who was thinking of starting a family was a factor too.
I also have a blog outside of posting on this site at http://msyoungadult.blogspot.com/. I am knew to this whole blogging thing and with two small kids, I don't write as often as I would like. But if you are interested in reading, I thought I would share.
Thanks again for your comment.
Kristin