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Who do you tell?
When you were diagnosed with MS, who did you tell? My husband asked today whether I am going to tell people or just keep it in the family and I just don't know at this point. It's a part of me now and I'm not ashamed but I don't want people to look at me differently or feel sorry for me... but I do have some limitations (mostly due to exhaustion) so maybe I should just get it all out in the open.
I told my family - via a mass email, except for my elderly parents - that I was undergoing tests for MS. I told my parents in person even though my dad is internet savy and is on his email daily.
I also told my boss (who is great!) and my coworker over a nice leisurely lunch. They were extremely supportive in my taking the time necessaary for testing. I couldn't very well be off work for all these appointments without a good explanation.
Our department is very observant and once I had a firm diagnosis I just put it out in an email to all the faculty and told them. I thought it best to just make it public and stop any speculation for why I was in and out of work and why I was staggering down the halls. the reactions were varied but all of them meant sincerely. Almost all of them had work history with one of our faculty members who retired because of her MS so they understood the worst case scenario of the disease.
Your comfort level will change - right now this is all so new and you are trying to figure out what this dx means. I am sure you will tell the people who you feel comfortable with knowing in due time.
You may want to investigate some options to get help with your children if that is needed - make plans now in case you need them. With summer coming up, perhaps you can find a neighborhood youth who could come and give you some relief by taking your children outside to play or helping with a few light household chores? An hour here or there can make a big difference.
The stories here are sure varied and you can see it really is an individual decision - good luck in finding what make you most comfortable.
best, Lulu
I also told my boss (who is great!) and my coworker over a nice leisurely lunch. They were extremely supportive in my taking the time necessaary for testing. I couldn't very well be off work for all these appointments without a good explanation.
Our department is very observant and once I had a firm diagnosis I just put it out in an email to all the faculty and told them. I thought it best to just make it public and stop any speculation for why I was in and out of work and why I was staggering down the halls. the reactions were varied but all of them meant sincerely. Almost all of them had work history with one of our faculty members who retired because of her MS so they understood the worst case scenario of the disease.
Your comfort level will change - right now this is all so new and you are trying to figure out what this dx means. I am sure you will tell the people who you feel comfortable with knowing in due time.
You may want to investigate some options to get help with your children if that is needed - make plans now in case you need them. With summer coming up, perhaps you can find a neighborhood youth who could come and give you some relief by taking your children outside to play or helping with a few light household chores? An hour here or there can make a big difference.
The stories here are sure varied and you can see it really is an individual decision - good luck in finding what make you most comfortable.
best, Lulu
My mom was in the room with me when my neuro broke the news that it looked like MS... she saved me the trouble of telling everybody and their dog. Though, I honestly didn't mind.
To be honest I don't hide it. I don't offer information to people that aren't close to me but I don't hide the fact that I have MS. I do try to hide the pain and some of the symptoms that I can control.
As said previously people who don't have MS will never truley understand. It is hard for them to wrap their heads around the way we really feel and that we can have good days and bad days. I have learned to just not let people see me in pain when it is controllable. That includes my family except my DH. He sees me in pain because a lot of my leg pain is so much worse at night. He has learned that when we are in bed, to put his legs on top of my leg because the pressure helps!
It is totally a personal decision as to whether you tell people or not. I don't keep it a secret but I don't offer information either.
Paula
As said previously people who don't have MS will never truley understand. It is hard for them to wrap their heads around the way we really feel and that we can have good days and bad days. I have learned to just not let people see me in pain when it is controllable. That includes my family except my DH. He sees me in pain because a lot of my leg pain is so much worse at night. He has learned that when we are in bed, to put his legs on top of my leg because the pressure helps!
It is totally a personal decision as to whether you tell people or not. I don't keep it a secret but I don't offer information either.
Paula
COMMUNITY LEADER
It was only yesterday i had to explain my self to a stranger, lol the builder from our insurance company (big tree branch fell on our house and verandah) was here to quote it up. When he arrived i was for me, pretty stable, but after about half an hour the tremor was getting rather noticable, that and i was hanging onto the walls and furniture trying to stay up lol
I didn't have any intention of saying anything, but after one rather wobbly near miss, I noticed his face and he looked a bit freaked out, i didn't see that i had much choice but to say something or he was going to be thinking i was drunk or drugged. I handled it the way i usually handle things, I laughingly appologised saying "wooops sorry about that, now if I do end up falling over, just step over me and pretend it neveeeeer happened!" lol
He laughed, told me i'd been scaring him half to death, so i sat down for him and he again laughed. He brought 'it' up when he asked me if I had Parkinsons or MS, and i simply said that at this stage its looking like MS but i'm really really sick of dr's at the moment so we dont know for sure.
My point of this little story is that sometimes its not what you say but how you say it, that really matters because others will respond to you in kind, you smile they smile, you laugh etc etc. Well thats always been my experience, anyway. :o)
Cheers...........JJ
I didn't have any intention of saying anything, but after one rather wobbly near miss, I noticed his face and he looked a bit freaked out, i didn't see that i had much choice but to say something or he was going to be thinking i was drunk or drugged. I handled it the way i usually handle things, I laughingly appologised saying "wooops sorry about that, now if I do end up falling over, just step over me and pretend it neveeeeer happened!" lol
He laughed, told me i'd been scaring him half to death, so i sat down for him and he again laughed. He brought 'it' up when he asked me if I had Parkinsons or MS, and i simply said that at this stage its looking like MS but i'm really really sick of dr's at the moment so we dont know for sure.
My point of this little story is that sometimes its not what you say but how you say it, that really matters because others will respond to you in kind, you smile they smile, you laugh etc etc. Well thats always been my experience, anyway. :o)
Cheers...........JJ
That's a very good point about your husband. When I finally grasped the stress this was putting on my husband, I encouraged him to tell his family. I didn't initially consider I was really asking him to lie by not saying anything. He speaks on the phone with them often, and would tell them all was fine when obviously it wasn't. He never complained about the pressure my illness was putting on him, and I finallly realized it was selfish of me not to encourage him to have someone outside of the situation to confide in. It's wise of you to have recognized this need a lot sooner than I did.
ps: Your kids won't accept a doctor's note for modified duties? Yeesh, that's pretty cold. You need a union. ;)
ps: Your kids won't accept a doctor's note for modified duties? Yeesh, that's pretty cold. You need a union. ;)
Thank you to everyone for your comments.
I'm a stay at home mom - so sadly no Doctor's note will work with my kids (haha). I would love it if I could say to them - all right, doctor says I need to rest so no fighting, no screaming and be on your best behaviour! (they are 10 months and 2 years old).
I have told 3 friends since posting this. Mostly because once I realized I was potentially dealing with MS, I stopped communicating with my friends while I tried to come to terms with everything.
I have decided not to tell my grandparents. Neither live close to me and I know it would just worry them.
Other than that, I will just take it as it comes. If I can't do something because I am too tired, I will be honest and tell whoever it is about the MS so they don't just think I'm a flake but, at this point, I think I've told all the people I'm comfortable telling.
I am going to talk to my husband and tell him he should feel free to tell some of his friends as I worry he doesn't have anyone outside of the family to talk to about it and I don't want him to feel cut off.
I'm a stay at home mom - so sadly no Doctor's note will work with my kids (haha). I would love it if I could say to them - all right, doctor says I need to rest so no fighting, no screaming and be on your best behaviour! (they are 10 months and 2 years old).
I have told 3 friends since posting this. Mostly because once I realized I was potentially dealing with MS, I stopped communicating with my friends while I tried to come to terms with everything.
I have decided not to tell my grandparents. Neither live close to me and I know it would just worry them.
Other than that, I will just take it as it comes. If I can't do something because I am too tired, I will be honest and tell whoever it is about the MS so they don't just think I'm a flake but, at this point, I think I've told all the people I'm comfortable telling.
I am going to talk to my husband and tell him he should feel free to tell some of his friends as I worry he doesn't have anyone outside of the family to talk to about it and I don't want him to feel cut off.
A lot has changed since I posted my comments four years ago. My MS is no longer a secret. It was a slow and very gradual process for me and I disclosed in stages.
I understand what others here are saying about being prepared for the reactions of others. I think the best way to do this is to try to minimize your own expectations, positive or negative. I was surprised by some responses.
One friend, a good friend but not one of my closest, burst into tears. That threw me off a little, Another, who also works where I do, I swore to secrecy, and she said nothing to anyone as I wished; then months later when I let her know the cat was out of the bag and she didn't have to play dumb if it happened to come up at work, immediately told a mutual acquaintance in detail everything that had been going on - my dx, my symptoms, my treatment!
One of the first close friends I confided in via email as she lives quite far from me, didn't respond for months, and then made up excuses about her computer not working (thoughI'd noticed she'd been on FB lots). Since then she's never mentioned it or asked how I am except in a very general way, or not really asking but saying "Hope you're doing great!!" and asmiley face. Which was pretty irritating if I happened to be in the middle of a bad relapse.
Most friends were really supportive. When I was off work the first time, so many people sent me flowers, gift baskets, cards, brought over meals and baking.
As it turned out, my mother told many more people than I even realized, before I had told some of my closest friends, then lied about it, was defensive and turnd it around like there's something wrong with me for not wanting to blab this to the world. Still a sore subject with us. We don't have a great relationship and this didn't help.
I probably would have held off longer in saying anything at work, had I not missed so much time and then needed accommodation when I returned. For the most part they were great at work, very flexible and accommodating; allowing me to work from a home when necessary, have flexible hours, reduce my hours as needed, provided voice activated software, etc etc. I was dismayed to learn my boss, who was very supportive in many ways, was speaking about my situation to coworkers.
If you're asking for any accommodation at work, you don't need to tell them you have MS, but you do need to advise you have a medical condition and what specific limitations this entails; and provide a physician's note supporting your request.
My advice is not to worry about anyone else's feelings but your own and do what feels right. If you're concerned about privacy and control over this information, for now, only tell those you have great confidence you can trust. Once it's out there you can't take it back.
Being open about it is an opportunity to raise awareness about the disease, and for those who are doing well, helps to dispel the misconception that everyone with MS ends up in a wheelchair, making the disease less scary to others who end up being dx'ed with it.
I understand what others here are saying about being prepared for the reactions of others. I think the best way to do this is to try to minimize your own expectations, positive or negative. I was surprised by some responses.
One friend, a good friend but not one of my closest, burst into tears. That threw me off a little, Another, who also works where I do, I swore to secrecy, and she said nothing to anyone as I wished; then months later when I let her know the cat was out of the bag and she didn't have to play dumb if it happened to come up at work, immediately told a mutual acquaintance in detail everything that had been going on - my dx, my symptoms, my treatment!
One of the first close friends I confided in via email as she lives quite far from me, didn't respond for months, and then made up excuses about her computer not working (thoughI'd noticed she'd been on FB lots). Since then she's never mentioned it or asked how I am except in a very general way, or not really asking but saying "Hope you're doing great!!" and asmiley face. Which was pretty irritating if I happened to be in the middle of a bad relapse.
Most friends were really supportive. When I was off work the first time, so many people sent me flowers, gift baskets, cards, brought over meals and baking.
As it turned out, my mother told many more people than I even realized, before I had told some of my closest friends, then lied about it, was defensive and turnd it around like there's something wrong with me for not wanting to blab this to the world. Still a sore subject with us. We don't have a great relationship and this didn't help.
I probably would have held off longer in saying anything at work, had I not missed so much time and then needed accommodation when I returned. For the most part they were great at work, very flexible and accommodating; allowing me to work from a home when necessary, have flexible hours, reduce my hours as needed, provided voice activated software, etc etc. I was dismayed to learn my boss, who was very supportive in many ways, was speaking about my situation to coworkers.
If you're asking for any accommodation at work, you don't need to tell them you have MS, but you do need to advise you have a medical condition and what specific limitations this entails; and provide a physician's note supporting your request.
My advice is not to worry about anyone else's feelings but your own and do what feels right. If you're concerned about privacy and control over this information, for now, only tell those you have great confidence you can trust. Once it's out there you can't take it back.
Being open about it is an opportunity to raise awareness about the disease, and for those who are doing well, helps to dispel the misconception that everyone with MS ends up in a wheelchair, making the disease less scary to others who end up being dx'ed with it.
Really interesting question. I'm a very open person but since I've not had the official "you have MS, lets get you on a treatment" chit chat with Neuro only a few people know (a few people for me anyway). My hubby, his close family, my close family and two friends. I told the friends as I'm so close to my family and my hubby, it was like they were going through it all too and it was too hard for me to talk openly about how I feel and I needed to talk. I am also living far away from my family and my hubbys family. So its just me, my hubby and two friends that are close by and in the know.
Once I get the RRMS Dx and start a treatment, I will tell my closest friends. I plan to keep this circle small though, I have fears of getting fired or not getting my contract renewed. It's a dog eat dog world in research :).
Once I get the RRMS Dx and start a treatment, I will tell my closest friends. I plan to keep this circle small though, I have fears of getting fired or not getting my contract renewed. It's a dog eat dog world in research :).
I too have made the situation known. My decision came in part, because many people have been aware of the last several relapses, so knowing why is a kind of closure for them. Besides, a serious illness is nothing to be ashamed of...
I can also see it from the other side. There are days I really wish that people didn't know, because I feel like I am treated like a delicate china teacup. (Although, when I am in a bad relapse- I do feel breakable.) Like all of us, I would love to experience what it felt like to "know" I was healthy.
Like Barb said, there is a measure of safety to having people know.
Tammy
I can also see it from the other side. There are days I really wish that people didn't know, because I feel like I am treated like a delicate china teacup. (Although, when I am in a bad relapse- I do feel breakable.) Like all of us, I would love to experience what it felt like to "know" I was healthy.
Like Barb said, there is a measure of safety to having people know.
Tammy
I too am an open book. MS is now part of who I am. My GF was along for the relapse/dx ride, so she knew. I started by telling my mother, sister and brother.
I told work because, leading up to my dx, I was leaving early/arriving late for Dr.s appointments, a lot. I didn't want any speculation. They've been great.
In conjunction with Walk MS fundraising I've told just about everyone else I know :-) So far all feedback ($11,835 and counting) has been very positive!
I told work because, leading up to my dx, I was leaving early/arriving late for Dr.s appointments, a lot. I didn't want any speculation. They've been great.
In conjunction with Walk MS fundraising I've told just about everyone else I know :-) So far all feedback ($11,835 and counting) has been very positive!
Being somewhat newly dx'd i struggle with this too. I told my closest friends but waited until after Christmas to do it since i found out on the 13th of Dec. I have not told many in my family, plan on telling them when i get back from vacation in two weeks. Knew they would not handle well and since they live fairly far away wanted to wait until I knew they had a trip to see me on the horizon,
Most people have been wonderful. My friends leave it alone don't hound me and just ask about it once in a while which is what I want. I do not want this to define me.
It definitely us your decision whichever way you decide to go, I have found that when people ask since I have a walking issue (injured my ankle and that lead to dx) I just pretty much say yes there is something wrong, no it can't be fixed and they are pretty good with that!
Most people have been wonderful. My friends leave it alone don't hound me and just ask about it once in a while which is what I want. I do not want this to define me.
It definitely us your decision whichever way you decide to go, I have found that when people ask since I have a walking issue (injured my ankle and that lead to dx) I just pretty much say yes there is something wrong, no it can't be fixed and they are pretty good with that!
Ha, Lisa, I had to look up AYFKM - LOL!!
I told 3 people at work that I'm pretty close to when I found out. And I'm also not close (geographically speaking) to any of my family except my 2 brothers. We're very close, so of course I told my brothers.
I also sent an e-mail out to extended family because I know they had all heard thru my grandma that things were going on with me. And I had sent a few T-spine MRI screenshots before I had been diagnosed to a couple of my mom's sisters. One teaches nursing at Loyola and the other is a nurse practitioner, the NP works with disability patients including transverse myelitis. She had knew when she saw my MRI that something was definitely wrong.
However, be prepared for no response from your family after you tell them. That's basically what I got, which made me pretty upset.
The other day a lady at my work that works out of her personal office in FL was in my office. She came up and asked me, "Don't you have something physically wrong with you? Weren't you diagnosed with something?" Things like that kind of upset me - I don't really want EVERYONE at my work to know.
It's up to you - what ever you want to do right now. You can always choose to tell them down the road. I just wonder if some family members or close friends may have their feeling hurt if you choose not to tell them. Especially if they don't find out for a long time and they might wonder why you waited to tell them. However, whatever you decide, it's up to YOU. It's your own personal choice.
I told 3 people at work that I'm pretty close to when I found out. And I'm also not close (geographically speaking) to any of my family except my 2 brothers. We're very close, so of course I told my brothers.
I also sent an e-mail out to extended family because I know they had all heard thru my grandma that things were going on with me. And I had sent a few T-spine MRI screenshots before I had been diagnosed to a couple of my mom's sisters. One teaches nursing at Loyola and the other is a nurse practitioner, the NP works with disability patients including transverse myelitis. She had knew when she saw my MRI that something was definitely wrong.
However, be prepared for no response from your family after you tell them. That's basically what I got, which made me pretty upset.
The other day a lady at my work that works out of her personal office in FL was in my office. She came up and asked me, "Don't you have something physically wrong with you? Weren't you diagnosed with something?" Things like that kind of upset me - I don't really want EVERYONE at my work to know.
It's up to you - what ever you want to do right now. You can always choose to tell them down the road. I just wonder if some family members or close friends may have their feeling hurt if you choose not to tell them. Especially if they don't find out for a long time and they might wonder why you waited to tell them. However, whatever you decide, it's up to YOU. It's your own personal choice.
Mummy, I'm pretty much an open book. The folks where I work (all 3 jobs) are aware, but I don't make a big deal out of it on a regular basis. When the subject comes up I give some short stock answers, and then quickly change the subject.
My family are all aware. My sis is totally over-protective, DH is very supportive. Mom still says some stupid things, for example, I e-mailed that I was having a few good, strong days. She replied "Great! I hope that's permanent!" AYFKM? I'm so bent on living in the present, she knows it, and yet she comes out with something like this... Nothing is permanent.
One Day at a Time.
Lisa
My family are all aware. My sis is totally over-protective, DH is very supportive. Mom still says some stupid things, for example, I e-mailed that I was having a few good, strong days. She replied "Great! I hope that's permanent!" AYFKM? I'm so bent on living in the present, she knows it, and yet she comes out with something like this... Nothing is permanent.
One Day at a Time.
Lisa
Hey Mummy,
A great question. Initially, I was terrified of people finding out about my illness because I thought that they may potentially judging me as inferior to them, and also I would never be promoted again in my employment.
I worried needlessly. There came a point after a couple of months where I spent more time and emotional effort tying to hide it. When I did 'come out' I was overwhelmed by all the love and support from family, friends and work.
Of course you always get one or two nitwits but that life. People in general are so understanding. So wear your MS badge with pride. We all have our own journey. Ours is MS, what's theirs?
Blessings
Alex
A great question. Initially, I was terrified of people finding out about my illness because I thought that they may potentially judging me as inferior to them, and also I would never be promoted again in my employment.
I worried needlessly. There came a point after a couple of months where I spent more time and emotional effort tying to hide it. When I did 'come out' I was overwhelmed by all the love and support from family, friends and work.
Of course you always get one or two nitwits but that life. People in general are so understanding. So wear your MS badge with pride. We all have our own journey. Ours is MS, what's theirs?
Blessings
Alex
Mummy, I am a pretty open person - so people who are close to me know. I also openly posted something on my FB page. My work department knows, my boss knows and upper management knows.
Really, anyone that needs to know...knows. There are safety reasons for informing. I leared this a long time ago with my kids as if something happened to me, it is important that those I'm surrounded with can tell an paramedic the important things (like if I might be taking steroids or other MS types of medication.)
That said, I don't openly post about my aches and pains are constantly compain about them even if they know...as I think that opens the door to pity. I seek understanding over pity. (I reserve complaining to certain people that I know "get it.")
Just my two cents. We have to do what we are comfortable with.
Really, anyone that needs to know...knows. There are safety reasons for informing. I leared this a long time ago with my kids as if something happened to me, it is important that those I'm surrounded with can tell an paramedic the important things (like if I might be taking steroids or other MS types of medication.)
That said, I don't openly post about my aches and pains are constantly compain about them even if they know...as I think that opens the door to pity. I seek understanding over pity. (I reserve complaining to certain people that I know "get it.")
Just my two cents. We have to do what we are comfortable with.
http://www.nytimes.com/2008/02/21/fashion/21WORK.html?_r=1
and an article from the NY Times re: disclosure at work.
and an article from the NY Times re: disclosure at work.
Hey mummy,
I'm heading off to bed so will come back to your post tomorrow; in the meantime, below is what I said on the topic of disclosure 4 years ago, about 6 months or so after dx.
=================================================
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'm heading off to bed so will come back to your post tomorrow; in the meantime, below is what I said on the topic of disclosure 4 years ago, about 6 months or so after dx.
=================================================
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 told a few friends, because I needed support, but that's about it. I did reveal at work, but that was mainly because I had been having some weird health problems leading up to diagnosis and didn't know why. If I had known they were due to MS, I probably would have kept it all to myself.
Whoever you tell, if they don't have MS, it's almost guaranteed that they won't know what to say to you and won't understand. Be prepared for that. They might say weird things that make you feel strange and sad - but it's not because they don't care. Often, it's actually a sign that they really care for you, it's just impossible for someone whose never been through it to know how to react. My only exception to that rule was my fiance and my mom...
- Jane
Whoever you tell, if they don't have MS, it's almost guaranteed that they won't know what to say to you and won't understand. Be prepared for that. They might say weird things that make you feel strange and sad - but it's not because they don't care. Often, it's actually a sign that they really care for you, it's just impossible for someone whose never been through it to know how to react. My only exception to that rule was my fiance and my mom...
- Jane
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