Tuesday, May 29, 2012

To Tell or Not to Tell, that is the Question?

By Kristin Monday, October 29, 2007

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.

Anonymous
Anne
10/30/07 12:02pm

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

11/ 7/07 6:41pm
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
Anonymous
smac
11/ 1/07 8:46pm
I have an easier time telling after having the disease for 36 years but I still don't like it and don't always tell. 
11/ 7/07 6:42pm
It's funny. I have an easier time telling people I hardly know, than the ones I know well. I think it is because I am afraid the ones I know well will treat me differently and the people I don't know well, I wouldn't be able to tell if they were treating me differently or not.

For me, I just assume people have heard through the grapevine since it has been so long, but every once in awhile, I surprise someone I know well, and then I feel really bad. So far I have not really had any negative responses from anyone that I have told.

Thanks for the comment.
11/ 5/07 9:31am

I always wondered and felt about the same as you .. but I am just starting to try and get my support team up to par ... coming here has taught me quite a few things I was not seeing thru all the fog ... I cannot work, but often wondered that if I could would I tell ? Only if it were necessary .. do you feel you can work ? If so, go for it and use the old "don't ask, don't tell" theory.

 

If you think working becomes too difficult, then just ask management can accomodate your issues.

 

I tried once to work setting up a really simple program on a friend's business computer, but my illness just wore me out .. I explained to my friend who understood and that is when I thought, I should really get used to the idea that working is out of the question.

 

I think it is most important that to friends, family and your boyfriend be educated about your condition, honesty with loved ones is the best policy ... always ..

11/14/07 10:36am

Thanks for your comment, sorry it has taken me so long to respond.

 

I am actually not working right now due to staying at home with my two kids, not the MS. I am going to be starting to work a little in December and then while the kids are in preschool starting January - I think most of it from home. I think I need to be around big people as my life revolves around the kids (as I wanted it to) right now.

 

As long as the job stays part time and does not get too full time, I should be fine with the MS, I am not expecting to have any problems. I actually told the person I will be working for about the MS. As I am pretty active around here, I figured I should be upfront with her from the get go in case she might see it somewhere else. I think because it is not critical that I work (although it will be very nice to feel like I am adding to our bottom line a little), I am not as concerned about any negative reprecussions from disclosing. And if there were negative reprecussions, then the job was not for me from the get go. I think all of the people that I have worked for since diagnosis have known and been extremely positive and accomidating toward me which has been such a blessing and gives me a positive outlook for disclosing.

 

My husband about a year back started wondering if the MS was getting worse and I said no, it is about the same as it always is. The thing that was different was I was just telling him more when I didn't feel well so I guess I should have been a bit more honest from the get go when my legs were tired or I was tired. But I am trying to be better, I just don't like worrying people over me so it is hard.

 

Thanks again.

5/ 4/10 2:40pm

Kristin-

 

As I read what you had written I was thinking to myself (did I write this and forget in some MS moment?) It is so me! I am in a new relationship after losing my husband 3 years ago and am really having trouble opening up to my fiance about my illness (fear it will be too much, he'll leave me, etc) It wasn't until the end of the article that I actually looked and saw your name. I am sending this to my fiance with a note-that says.... this is me....I didn't write it, but it is me. Thank you for putting my thoughts and fears down on paper and making it easier for me to express myself. Thank you for being that Superwoman.

God Bless,

Kristin

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By Kristin— Last Modified: 12/10/10, First Published: 10/29/07