Aa
Need some advice
I received my dx the beginning of December and really have not told anyone about it since the holidays were coming and wanted to digest the whole thing myself first. Well time has come to tell people and the two I am most worried or dare I say afraid to tell are my parents. To say they tend to get a little nuts when it comes to me is not an exaggeration. I am sure most parents are the same way but I have found I keep them on a need to know basis! This however is something they need to know. I am stable now and day to day other than taking more medicine than I have ever in my life things are not too bad. But I do know that this disease is about as predictable as the weather!
Any suggestions on how to let them know I am okay - they do not have to get into the car and drive here - I do not have to move to North Carolina so they can "take care" of me. With them living out of state it will be harder.
I am open to any and all ideas and thanks!
Any suggestions on how to let them know I am okay - they do not have to get into the car and drive here - I do not have to move to North Carolina so they can "take care" of me. With them living out of state it will be harder.
I am open to any and all ideas and thanks!
ut um...even when children are now parents themselves and grown up, ... (I know you know what I mean)
Hmmmmm
I find approach is everything. You are not freaking out, you've digested and are stable. They will probably receive you well w/this mind/body set.
Make sure Mom n Dad know it's nothing anyone did wrong. Parents tend to blame themselveswhen things go wrong for their children :)
You can do it. Just be you :) And, then bring them to a newly diagnosed seminar with you! So, you don't have to catch them up on the learning curve all by yourself!
-shell
I find approach is everything. You are not freaking out, you've digested and are stable. They will probably receive you well w/this mind/body set.
Make sure Mom n Dad know it's nothing anyone did wrong. Parents tend to blame themselveswhen things go wrong for their children :)
You can do it. Just be you :) And, then bring them to a newly diagnosed seminar with you! So, you don't have to catch them up on the learning curve all by yourself!
-shell
Crazy! My mom is in her 70's Suffers from depression ever since she found my father dead.So I decided NOT to tell her!
The secret really suks! I am sick of lying to her. She thinks I have chronic back pain and thats why i have a hard time walking! Sometimes she thinks I am drinking when i am not. Not easy! I wish I could tell her as she is my mom and the Love of my life although I do not want her to have the extra stress! She is a worry wart as is! Tuff stuff! Its been 4 years of lies!
The secret really suks! I am sick of lying to her. She thinks I have chronic back pain and thats why i have a hard time walking! Sometimes she thinks I am drinking when i am not. Not easy! I wish I could tell her as she is my mom and the Love of my life although I do not want her to have the extra stress! She is a worry wart as is! Tuff stuff! Its been 4 years of lies!
A couple of previous discussions we've had on disclosure including the matter of disclosure at work. Thought this might be helpful for you and/or others.
http://www.medhelp.org/posts/Multiple-Sclerosis/disclosure/show/491214
http://www.medhelp.org/posts/Multiple-Sclerosis/Im-Ill--but-Who-Really-Needs-to-Know/show/444526
http://www.nytimes.com/2008/02/21/fashion/21WORK.html
http://www.medhelp.org/posts/Multiple-Sclerosis/disclosure/show/491214
http://www.medhelp.org/posts/Multiple-Sclerosis/Im-Ill--but-Who-Really-Needs-to-Know/show/444526
http://www.nytimes.com/2008/02/21/fashion/21WORK.html
OK, long response, sorry! This whole topic of disclosure is rather complicated for me!
I didn't have a great experience with telling my mother. When I told her, I didn't yet have the official dx, as I was waiting t to see the MS specialist.....though having been seen by an on-call neurologist who thought MS but stopped short of connfirming it and instead saying "evidence of demyelinating disease", abnormal LP and MRIs, and already treated with IVSM, I knew I had MS.
Unfortunately when I told my mother I had not had enough time to process what was happening to me. I really struggled emotionally with my dx. At the time I had severe symptoms including off the charts double vision, severe rib crushing MS hug, severe vertigo, poor coordination painful limbs, exhaustion. I was a wreck and I was convinced all of this would be permanent. I went from feeling absolutely 100% healthy and fine, to being in that awful state within a matter of a few weeks. I thought my independence was gone; at that time I couldn't drive, couldn't work, I was completely freaked out and felt my career was over, that I'd be completely dependent on my husband, would never again be able to travel, etc. I was thinking worst case scenario, worried about being in a wheelchair, and so on. I also had the strangest reaction in that I felt ashamed! It's not that I thought I'd done anything to bring it on, that's why this reaction didn't make sense. I was embarrassed about it, about seeming weak and sickly and that people would pity me.
ANYWAY, because of all of that I was very fragile emotionally, and I couldn't talk about it without a huge lump in my throat and dissolving in tears. Only my husband and my best friend knew, and they were sworn to secrecy. At first I was determined no one else would ever know, and I believed this was possible since we live far from family and most of our friends, and we don't see most of them very often.
I only told my mother as early as I did because we were supposed to meet up with her on vacation around the time of my dx. We had planned to fly to New England that Fall, rent a car and drive up to Toronto and see her. It had been a couple of years since I'd last seen her. Due to all of my symptoms and my dx pending, I had to cancel this trip. I considered lying and saying I couldn't go because of work, but I knew she would be majorly pi$$ed and I didn't want to deal with that, so when I told her I was sick, I was telling her I was ok but crying as I said it, so wasn't really very convincing, lol. She is waaaayyy more emotional than me at the best of times, so she was very upset. She has two close friends with progressive MS who are no longer ambulatory, in fact one is in a nursing home as his wife can no longer look after. So my mom was also in worst case scenario land too.
The other issue with my disclosure to my mother is that although I swore her to secrecy other than the one friend whom she was visiting when she got the news from me, and she was adamant she would not tell anyone, I discovered soon after that she had told several friends and family members and some of them had passed it on to others. I was furious and we didn't speak for a few months. I really felt betrayed, and felt like I no longer had control of the one thing I thought I had, which was my privacy.
At that point I myself only had told a couple of very close friends of mine, yet her social circle and relatives I don't even have a relationship with knew my secret.
To make things worse, she didn't take any responsibility for it and turned it around like there was something wrong with me to be so paranoid about telling anyone. Paranoid was not her exact word, but that was the gist of it.
After that, as far as everyone else in my life, I disclosed in stages, by phone or in person or by email depending on the relationship. I slowly let more and more friends know, then my boss and co-workers several months later, once it was clear I'd be off work indefinitely (ended up off a full year before returning).
Now I am over it and completely open about it, and people are supportive. I am again off work several months now, and socially end up cancelling half of the plans I make because of feeling like cr@p, so it's helpful for people to understand I have this disease and how it affects me so, they understand when I can't make firm commitments. I know there are some that do pity me - initially my worst fear about all of this. Now I am ok with that because I myself no longer feel pitiful.
I think the advice that others here haven given is great, especially Janet's suggestion to skype if you can. Because you are calm and not upset, it will be reassuring to your parents to see this. If this isn't feasible, at least they will hear it in your voice. It's good that you've given yourself time to digest this before telling them, and it sounds like you needed a lot less time to get to this point than I did. :) Good luck and if you're so inclined, let us know how it went.
I didn't have a great experience with telling my mother. When I told her, I didn't yet have the official dx, as I was waiting t to see the MS specialist.....though having been seen by an on-call neurologist who thought MS but stopped short of connfirming it and instead saying "evidence of demyelinating disease", abnormal LP and MRIs, and already treated with IVSM, I knew I had MS.
Unfortunately when I told my mother I had not had enough time to process what was happening to me. I really struggled emotionally with my dx. At the time I had severe symptoms including off the charts double vision, severe rib crushing MS hug, severe vertigo, poor coordination painful limbs, exhaustion. I was a wreck and I was convinced all of this would be permanent. I went from feeling absolutely 100% healthy and fine, to being in that awful state within a matter of a few weeks. I thought my independence was gone; at that time I couldn't drive, couldn't work, I was completely freaked out and felt my career was over, that I'd be completely dependent on my husband, would never again be able to travel, etc. I was thinking worst case scenario, worried about being in a wheelchair, and so on. I also had the strangest reaction in that I felt ashamed! It's not that I thought I'd done anything to bring it on, that's why this reaction didn't make sense. I was embarrassed about it, about seeming weak and sickly and that people would pity me.
ANYWAY, because of all of that I was very fragile emotionally, and I couldn't talk about it without a huge lump in my throat and dissolving in tears. Only my husband and my best friend knew, and they were sworn to secrecy. At first I was determined no one else would ever know, and I believed this was possible since we live far from family and most of our friends, and we don't see most of them very often.
I only told my mother as early as I did because we were supposed to meet up with her on vacation around the time of my dx. We had planned to fly to New England that Fall, rent a car and drive up to Toronto and see her. It had been a couple of years since I'd last seen her. Due to all of my symptoms and my dx pending, I had to cancel this trip. I considered lying and saying I couldn't go because of work, but I knew she would be majorly pi$$ed and I didn't want to deal with that, so when I told her I was sick, I was telling her I was ok but crying as I said it, so wasn't really very convincing, lol. She is waaaayyy more emotional than me at the best of times, so she was very upset. She has two close friends with progressive MS who are no longer ambulatory, in fact one is in a nursing home as his wife can no longer look after. So my mom was also in worst case scenario land too.
The other issue with my disclosure to my mother is that although I swore her to secrecy other than the one friend whom she was visiting when she got the news from me, and she was adamant she would not tell anyone, I discovered soon after that she had told several friends and family members and some of them had passed it on to others. I was furious and we didn't speak for a few months. I really felt betrayed, and felt like I no longer had control of the one thing I thought I had, which was my privacy.
At that point I myself only had told a couple of very close friends of mine, yet her social circle and relatives I don't even have a relationship with knew my secret.
To make things worse, she didn't take any responsibility for it and turned it around like there was something wrong with me to be so paranoid about telling anyone. Paranoid was not her exact word, but that was the gist of it.
After that, as far as everyone else in my life, I disclosed in stages, by phone or in person or by email depending on the relationship. I slowly let more and more friends know, then my boss and co-workers several months later, once it was clear I'd be off work indefinitely (ended up off a full year before returning).
Now I am over it and completely open about it, and people are supportive. I am again off work several months now, and socially end up cancelling half of the plans I make because of feeling like cr@p, so it's helpful for people to understand I have this disease and how it affects me so, they understand when I can't make firm commitments. I know there are some that do pity me - initially my worst fear about all of this. Now I am ok with that because I myself no longer feel pitiful.
I think the advice that others here haven given is great, especially Janet's suggestion to skype if you can. Because you are calm and not upset, it will be reassuring to your parents to see this. If this isn't feasible, at least they will hear it in your voice. It's good that you've given yourself time to digest this before telling them, and it sounds like you needed a lot less time to get to this point than I did. :) Good luck and if you're so inclined, let us know how it went.
You just received some wonderful advice. Being a mother with sons living out of state I can tell you how I would react. Let's pretend I knew nothing about MS and received a phone call.
Get ready for company...I hope you have some good friends there that will help you prepare for their arrival. Until they see you in person (skype may work if they are into computers...which I am because my sons have taught me) but it still may not be enough. As a mother I would definitely want to see my son...in person...to read into his eyes and know he was handling it.
Telling them it is not fatal will help. If they don't arrive on your doorsteps expect calls daily for updates (which is gonna drive you crazy) until they have accepted it and can move on.
Their next concern is going to be financial. You have told us you work two jobs seven days a week. Your parents aren't going to like it. If they are financially able they will want to give you a monthly allowance to keep you steady and working only one job. I hope if they offer you will accept it with grace. The next thing I would do is get to my lawyer and make sure upon our death you would be taken care of with most my money left to you. My other sons would be getting a small token and be told why. I would then tell you I wanted that money put aside for later if and when needed...for you to be wise on handling it.
I don't want you to feel you have to answer my post telling of your parents financial picture or of yours. I just write this as a mother and what I would do. Your finances are private and not our business. Again, I write on how I would handle it. All my sons would be informed and quickly so!! The lawyer would be working on it as I drove or got on the airplane. I wouldn't waste a moment in being sure.
Okay so again, this is my opinion only and exactly what I would do. I will be thinking about you during this part of your journey. I will tell you that as I read posts from you...as a mother...I worried for you. Working two jobs and with health problems (this was even before the dx) my heart went out to you.
May your karma be kind in the coming years.
Hugs,
Sumana
Get ready for company...I hope you have some good friends there that will help you prepare for their arrival. Until they see you in person (skype may work if they are into computers...which I am because my sons have taught me) but it still may not be enough. As a mother I would definitely want to see my son...in person...to read into his eyes and know he was handling it.
Telling them it is not fatal will help. If they don't arrive on your doorsteps expect calls daily for updates (which is gonna drive you crazy) until they have accepted it and can move on.
Their next concern is going to be financial. You have told us you work two jobs seven days a week. Your parents aren't going to like it. If they are financially able they will want to give you a monthly allowance to keep you steady and working only one job. I hope if they offer you will accept it with grace. The next thing I would do is get to my lawyer and make sure upon our death you would be taken care of with most my money left to you. My other sons would be getting a small token and be told why. I would then tell you I wanted that money put aside for later if and when needed...for you to be wise on handling it.
I don't want you to feel you have to answer my post telling of your parents financial picture or of yours. I just write this as a mother and what I would do. Your finances are private and not our business. Again, I write on how I would handle it. All my sons would be informed and quickly so!! The lawyer would be working on it as I drove or got on the airplane. I wouldn't waste a moment in being sure.
Okay so again, this is my opinion only and exactly what I would do. I will be thinking about you during this part of your journey. I will tell you that as I read posts from you...as a mother...I worried for you. Working two jobs and with health problems (this was even before the dx) my heart went out to you.
May your karma be kind in the coming years.
Hugs,
Sumana
"I think waiting helped because it allowed me to get a grip on it and I can tell them with more certainty in my voice. "
I think this is right on the money! They may fire 100 questions at you and you have the information to respond.
I told my mother, brother and sister just before 85% sure was moved to 100%.We were all at my mother's beach house anyway, and I didn't look too good :-) My sister's a nurse and has a friend with MS so she helped a lot.
I think this is right on the money! They may fire 100 questions at you and you have the information to respond.
I told my mother, brother and sister just before 85% sure was moved to 100%.We were all at my mother's beach house anyway, and I didn't look too good :-) My sister's a nurse and has a friend with MS so she helped a lot.
Thanks for the advice - I am the same since the letters MS came into discussion I have read all I could. When I went for my appt for diagnosis I could talk intelligently with my neuro which helped. I plan on making the call to them after their vacation and just telling them I am okay and giving them the news. I think waiting helped because it allowed me to get a grip on it and I can tell them with more certainty in my voice.
I was pretty open with telling everyone what was going on during the process.... for telling my mom, I took the step of really not letting her ask questions til I was done explaining. I started by telling her I was fine, was not life threatening and just something we needed to deal with.
Not sure there is a right or wrong way to tell family and friends, but I found that taking a sorta matter of fact stance made everyone seem to feel less panicky. Guess if I was not upset and whigging out, they felt they did not need to either.... But, that is kinda my personality. I take the bull by the horns all the time and did lots of reading so I felt confident about questions they might throw out....
Once you get started talking with everyone, it gets easier....
Good luck!
Jen
I just "came out" to my mother, which was something that scared me very much, because I was afraid she would be sad and worried. She took it better than I thought - although she did cry a little. I found myself saying to her all the things my neuro had said to me when I was diagnosed (the disease is highly variable, the drugs will slow and possibly prevent the progression, this will not stop me from living a full, happy life).
My mom lives several hours from me, but I wanted to tell her face-to-face so I waited until the holidays. It was really hard for me to decide to do it at that time, but I'm glad I did, because I could tell that she took it better because she could see my face and see that I wasn't scared.
You might think about skyping them if you're into technology, they can get connected, and you can come up with a good excuse to skype other than "I have some crazy news for you". I think the more parents can see that their child is okay with the diagnosis, the better they take the news. If you can't skype, just keep in mind that the more calm and collected you can sound over the phone, the better off they will be.
I once read an article about explaining DMD's to children that suggested you talk about it as a daily health act akin to brushing your teeth. I think that's a good way to put it, for kids and parents!
Best wishes,
J
My mom lives several hours from me, but I wanted to tell her face-to-face so I waited until the holidays. It was really hard for me to decide to do it at that time, but I'm glad I did, because I could tell that she took it better because she could see my face and see that I wasn't scared.
You might think about skyping them if you're into technology, they can get connected, and you can come up with a good excuse to skype other than "I have some crazy news for you". I think the more parents can see that their child is okay with the diagnosis, the better they take the news. If you can't skype, just keep in mind that the more calm and collected you can sound over the phone, the better off they will be.
I once read an article about explaining DMD's to children that suggested you talk about it as a daily health act akin to brushing your teeth. I think that's a good way to put it, for kids and parents!
Best wishes,
J
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