Aa
disclosure
I am wondering how all of you who have been diagnosed with MS have dealt with the issue of disclosure.
I am struggling with this. Over the past 7 months I have gradually confided in several close friends and a couple of relatives. All sworn to secrecy. I am geographically distanced from most of my close friends. I am not close (geographically or otherwise) to most in my family. Those who know have been very supportive and I do talk about it with them.
After a while I told my boss and my boss's boss, and a few co-worker who are friends. Also sworn to secrecy. My workplace places a high premium on confidentiality so I'm pretty confident it has not gotten around there. Initially I thought I would be back to work promptly, I'd 'look normal' (at least for a while), and no one would need to know. Some people reached out to me initially through calls and emails, knowing something was wrong but not what. I have kept these people at bay and avoided dealing with the whole thing.
Some of my initial feelings about my dx included feeling defective and ashamed somehow. It was like I was and am embarrassed about this. I think those feelings linger a bit, although are not as bad as before. Perhaps this turning inward is serving a function to keep me in a wee bit of denial. That only occurred to me recently. Lastly, more than anything, I would find it disturbing to be the object of pity.
I have been really upset with my mother. She agreed not to discuss it with anyone, then over time has told at least 2 friends of her and 2 relatives. So I suspect it's gone further than that. If she didn't keep my secret, why would these other people feel obliged to?
Having said all of that, it is starting to get a bit ridiculous. Obviously people are aware there is something seriously wrong, having been off work for 7 months now, cancelling vacation plans, etc. etc. I get anxious at the idea of running into someone who doesn't know and feeling like I have to explain; and being self-conscious that my eyes are still not straight and it will be obvious I am messed up. I worry I might just starting crying on the spot if I get in a situation like that. Most of the time it's not a problem as I rarely go anywhere these days due to feeling like cr*p not to mention self-conscious.
I think the time has come to let go of the fear of people knowing. However, since it's been under wraps for so long, I'm not sure how. It's not like I want to make a big annoucement about it.
I would be really grateful to hear how you have dealt with this; I'm sure there are things I can learn from you on the subject.
Thanks
db1
I am struggling with this. Over the past 7 months I have gradually confided in several close friends and a couple of relatives. All sworn to secrecy. I am geographically distanced from most of my close friends. I am not close (geographically or otherwise) to most in my family. Those who know have been very supportive and I do talk about it with them.
After a while I told my boss and my boss's boss, and a few co-worker who are friends. Also sworn to secrecy. My workplace places a high premium on confidentiality so I'm pretty confident it has not gotten around there. Initially I thought I would be back to work promptly, I'd 'look normal' (at least for a while), and no one would need to know. Some people reached out to me initially through calls and emails, knowing something was wrong but not what. I have kept these people at bay and avoided dealing with the whole thing.
Some of my initial feelings about my dx included feeling defective and ashamed somehow. It was like I was and am embarrassed about this. I think those feelings linger a bit, although are not as bad as before. Perhaps this turning inward is serving a function to keep me in a wee bit of denial. That only occurred to me recently. Lastly, more than anything, I would find it disturbing to be the object of pity.
I have been really upset with my mother. She agreed not to discuss it with anyone, then over time has told at least 2 friends of her and 2 relatives. So I suspect it's gone further than that. If she didn't keep my secret, why would these other people feel obliged to?
Having said all of that, it is starting to get a bit ridiculous. Obviously people are aware there is something seriously wrong, having been off work for 7 months now, cancelling vacation plans, etc. etc. I get anxious at the idea of running into someone who doesn't know and feeling like I have to explain; and being self-conscious that my eyes are still not straight and it will be obvious I am messed up. I worry I might just starting crying on the spot if I get in a situation like that. Most of the time it's not a problem as I rarely go anywhere these days due to feeling like cr*p not to mention self-conscious.
I think the time has come to let go of the fear of people knowing. However, since it's been under wraps for so long, I'm not sure how. It's not like I want to make a big annoucement about it.
I would be really grateful to hear how you have dealt with this; I'm sure there are things I can learn from you on the subject.
Thanks
db1
This is a tough one. I think you have to do what you feel comfortable doing. You have heard so far on here the different things that have happened to people. So you have to go into this with an open mind and open eyes. I am a mom of my 12 yr old son with "highly suspected MS" and I had to get FMLA to take care of him during his episodes. I found some friends and most family and some co-workers supportive. I also found some friends (would call them acquaintances now) and co-workers (only work with them now) not so supportive. I have become hard on outside but still a big softy inside. This is not about anyone else and I don't care how they feel when I am not there. I am taking care of my son and you are taking care of you. In the big scheme of things you and your family are #1 priority and this is all that matters. I wish you the best!
I have been struggling with that very same issue, and understand why it is a big deal for you. I, too, am intensely private. I do not want to be treated differently - I don't want people to think I am 'delicate'. Since I keep it a secret (from most people outside of my immediate family), I sometimes end up feeling isolated. I think there is some shame and embarassment in there too. I know there are times when people wonder what is wrong with me, and I wonder what conclusions they draw on their own since I do not provide the correct information.
I wish there was a simple answer. I do not want people to stop asking me for help and start offering it instead. I do not want to be less involved as a result of people assuming I can not 'handle very much'. On the other hand, I want people to understand why I have to limit my activity sometimes.
Thanks for bringing this up.
D
I wish there was a simple answer. I do not want people to stop asking me for help and start offering it instead. I do not want to be less involved as a result of people assuming I can not 'handle very much'. On the other hand, I want people to understand why I have to limit my activity sometimes.
Thanks for bringing this up.
D
I was one of the top product advisors for the Top Auto Manufacturer
in the World! In 2009 I was in the Top 1% in the country!
I took 4 days off! When I returned to work My boss called me in his office and we had a talk! I came clean with him about my MS and lost my job and benefits days later!
I have 2 young kids a wife that does not work I have No Job, big bills and huge stress!
Wish I never told him!
Yes I am suing!
in the World! In 2009 I was in the Top 1% in the country!
I took 4 days off! When I returned to work My boss called me in his office and we had a talk! I came clean with him about my MS and lost my job and benefits days later!
I have 2 young kids a wife that does not work I have No Job, big bills and huge stress!
Wish I never told him!
Yes I am suing!
Thanks all for sharing your perspective. It IS interesting to hear how different people handle this aspect of having an illness. There are so many factors that influence how we deal with it: our support systems, career concerns, the nature of our relationships, our self-image, unique personalities and individual coping methods.
I realize I have been so private about this in part because in general I tend to be a very private person, in addition to those reasons I mentioned above. When I first learned of possible MS, I told only my husband and best friend, and kept it that way for over a year. No one had a clue anything was going on. I used vacation time to go to appts so I wouldn’t have to explain anything at work. Even after dx, I initially was determined that NO ONE else would know. That soon proved unrealistic and in fact impossible, even more so after being out of commission now for so long.
I think that I have a tendency to associate discretion in dealing with personal matters with dignity, and I so much want to handle this with dignity. In my own relationships and acquaintances, I sometimes am turned off by others who seem to wear everything on their sleeve and, in my perception (skewed perhaps!), cross boundaries by sharing too much information. But in my logical brain I do realize one can be gracious and dignified and open all at the same time. There is something to be said for your point, Sally, about being open and showing people that MS is not the end of the world. I do realize if more people did this, there would be less stigma and misconceptions about the disease.
I know it will get easier for me as time goes on and this continues to sink into my consciousness. I appreciated hearing how you dealt with this in your own way. It was very helpful for me.
db1
I realize I have been so private about this in part because in general I tend to be a very private person, in addition to those reasons I mentioned above. When I first learned of possible MS, I told only my husband and best friend, and kept it that way for over a year. No one had a clue anything was going on. I used vacation time to go to appts so I wouldn’t have to explain anything at work. Even after dx, I initially was determined that NO ONE else would know. That soon proved unrealistic and in fact impossible, even more so after being out of commission now for so long.
I think that I have a tendency to associate discretion in dealing with personal matters with dignity, and I so much want to handle this with dignity. In my own relationships and acquaintances, I sometimes am turned off by others who seem to wear everything on their sleeve and, in my perception (skewed perhaps!), cross boundaries by sharing too much information. But in my logical brain I do realize one can be gracious and dignified and open all at the same time. There is something to be said for your point, Sally, about being open and showing people that MS is not the end of the world. I do realize if more people did this, there would be less stigma and misconceptions about the disease.
I know it will get easier for me as time goes on and this continues to sink into my consciousness. I appreciated hearing how you dealt with this in your own way. It was very helpful for me.
db1
It seems like people handle this really differently. I totally understand your approach b/c I tend to be a private person myself. On the other hand, I have a cousin who is completely "out of the closet" about her MS and she found it really freeing to just have it out in the open.
I had trouble with this issue for a long time when I thought I had "idiopathic peripheral neuropathy." I had a lot of difficulty explaining it to the few people I told b/c most of them had only a vague idea of what idiopathic meant and had never heard of peripheral neuropathy. So it wasn't very satisfying to tell anyone. Plus there's not much to do about something that's idiopathic (can you tell that word drove me crazy?)
On the other hand, I also didn't tell my mother about my symptoms for a really long time. It was such a vague thing (and I kept hoping it might go away just as mysteriously as it had appeared) and I didn't want to worry her. And the longer I didn't tell her (we're talking years), the harder it got to bring up. Technically, I never did tell her--my husband did. He happened to mention something to my mom about my legs one day, not imagining that I had never told her. Anyway, I don't recommend that as a method of disclosure :)
Except for at work, I have been much more open with the MS diagnosis in part b/c people at least have something to hang their hats on with that and in part b/c of the way things turned out with my mom when I waited so long to say anything. I do notice that I still have, especially with people close to me, a real tendency to downplay or minimize my symptoms, which I can get away with b/c most of the time they're not visible (I think).
Not sure how helpful that was, but a different perspective anyway.
sho
I had trouble with this issue for a long time when I thought I had "idiopathic peripheral neuropathy." I had a lot of difficulty explaining it to the few people I told b/c most of them had only a vague idea of what idiopathic meant and had never heard of peripheral neuropathy. So it wasn't very satisfying to tell anyone. Plus there's not much to do about something that's idiopathic (can you tell that word drove me crazy?)
On the other hand, I also didn't tell my mother about my symptoms for a really long time. It was such a vague thing (and I kept hoping it might go away just as mysteriously as it had appeared) and I didn't want to worry her. And the longer I didn't tell her (we're talking years), the harder it got to bring up. Technically, I never did tell her--my husband did. He happened to mention something to my mom about my legs one day, not imagining that I had never told her. Anyway, I don't recommend that as a method of disclosure :)
Except for at work, I have been much more open with the MS diagnosis in part b/c people at least have something to hang their hats on with that and in part b/c of the way things turned out with my mom when I waited so long to say anything. I do notice that I still have, especially with people close to me, a real tendency to downplay or minimize my symptoms, which I can get away with b/c most of the time they're not visible (I think).
Not sure how helpful that was, but a different perspective anyway.
sho
I had it easier, as my sister had MS before I did. I raised money for MS for her, talked about it with others, then when I was dx I was very open about it. I wanted to help others
see that it wasn't the end of the world, that they could talk to me about it without embarassment, etc.
In defense of your mother, having your child have a problem is very hard and she may have needed someone to confide in - I know my mom is sometimes hesitant to question us out of fear of offending or sayig the wrong thing.
My sister worked for Bank of American, an unfriendly to employee company. She kept her MS on the down low. I worked for a family owned company and they were very employee considerate - so there are a lot of considerations to who and how you let people know.
Hang in there, Sallyr
see that it wasn't the end of the world, that they could talk to me about it without embarassment, etc.
In defense of your mother, having your child have a problem is very hard and she may have needed someone to confide in - I know my mom is sometimes hesitant to question us out of fear of offending or sayig the wrong thing.
My sister worked for Bank of American, an unfriendly to employee company. She kept her MS on the down low. I worked for a family owned company and they were very employee considerate - so there are a lot of considerations to who and how you let people know.
Hang in there, Sallyr
I struggled with this issue at first. I only told a handful of friends. My family knew though.
I have now told more friends and a few people at church. I have given them the ok to tell others if there is a reason.
I am often asked or invited to go to functions and things having to do with the kids, but I can't. I thought it was best to let others know of my dx that way they would understand when I said no to their invites.
LA
I have now told more friends and a few people at church. I have given them the ok to tell others if there is a reason.
I am often asked or invited to go to functions and things having to do with the kids, but I can't. I thought it was best to let others know of my dx that way they would understand when I said no to their invites.
LA
"If she didn't keep my secret, why would these other people feel obliged to?"
You have already stated the fastest way to inform people of the situation but I understand where you are coming from.
When I was first diagnosed I was not concerned with telling anyone about what I was dealing with and I think everyone knew. I suppose that maybe I am not as private a person as you in that I have never held back telling everyone that I was adopted either! It just didn't matter to me that much...I figured that if my being adopted was going to affect any relationship I had, that relationship wasn't worth trying to hang on to!
Being that you have told the "bosses" at work and a few co-workers, I don't think I understand why you are so concerned about people knowing that you have MS?
I don't think either that you need to make a big announcement about it but just let the information come out as life goes on! The people who thus far didn't know, obviously didn't need to know in the first place and it was none of their business. If they become angry that you didn't tell them sooner, just explain that you were not sure what the problem was and you didn't want to say anything until you did!
Honey, I think you are working yourself up for something that, in my opinion is not that big of a deal! You have dealt with this the way it has been comfortable for you...you don't really have to explain yourself to anyone right?
Lots of Hugs,
Rena
You have already stated the fastest way to inform people of the situation but I understand where you are coming from.
When I was first diagnosed I was not concerned with telling anyone about what I was dealing with and I think everyone knew. I suppose that maybe I am not as private a person as you in that I have never held back telling everyone that I was adopted either! It just didn't matter to me that much...I figured that if my being adopted was going to affect any relationship I had, that relationship wasn't worth trying to hang on to!
Being that you have told the "bosses" at work and a few co-workers, I don't think I understand why you are so concerned about people knowing that you have MS?
I don't think either that you need to make a big announcement about it but just let the information come out as life goes on! The people who thus far didn't know, obviously didn't need to know in the first place and it was none of their business. If they become angry that you didn't tell them sooner, just explain that you were not sure what the problem was and you didn't want to say anything until you did!
Honey, I think you are working yourself up for something that, in my opinion is not that big of a deal! You have dealt with this the way it has been comfortable for you...you don't really have to explain yourself to anyone right?
Lots of Hugs,
Rena
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