who do we turn to for support?

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madlou
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 5/29/2007 3:32 PM (GMT -6)   
It's been a little over a year since my M.S. started. I was diagnosed in Dec 06. I work full time. I hope to continue to work, even though there are times when it is difficult. My office is a small one with only four of us. I thought we were all friends. Since my illness began I feel as though no one understands what I'm going through. I sometimes feel as though they think I'm exaggerating or a hypochondriac. Sometimes the attitude I get causes me stress and the stress causes me physical pain. I know that a lot of you understand what I'm going through. I'm so glad this forum is here. Sometimes I think about just going to work and staying in my own office, not talking to anyone. But I don't want to come across as a big baby either. I think I need to find a counselor who understands the grief involved with an illness and the diminishment I feel. Today one woman told me she thought I just needed to go back to living my life the way it was before. As if I have a choice!
Rebif 44 mcg x 3; lyrica; ambien


momofltlbrat
Regular Member


Date Joined Apr 2007
Total Posts : 164
   Posted 5/29/2007 3:51 PM (GMT -6)   
madlou,

I am sorry you have to suffer through the ignorance of co-workers. Maybe leaving some literature around for them to look at might help. When I was only dx with fibro, I would remind people how it feels to have the flu, and tell them that is how I feel 24/7. It's a little harder to explain the MS. Too many people associate MS with a wheelchair.

I am proud you are still working. That in itself is no small feat. Be proud of what you can do, and ignore the comments. My counselor assures me that mean people are that way because they have problems of their own that they won't face. Hope that helps.

Debbie

madlou
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 5/29/2007 5:57 PM (GMT -6)   
You are seeing a counselor? Did you look for someone who specializes in treating those with illness or pain? I just thought about a counselor I dealt with a few years ago. She was probably in her late 40s or early 50s but she'd had a hip replacement which left her with an odd gait. I would think she would understand both pain and loss. I might just call her tomorrow and make an appointment. I need to talk to someone and deal with the sorrow MS is causing me. The women in my office were people I considered friends. We've talked about so many private things. I thought they would understand because they've all been through medical problems of their own. But that actually seems to make it harder for them to get it. Maybe they just don't want to face a serious illness in their midst. Thanks Debbie.
Rebif 44 mcg x 3; lyrica; ambien


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 5/29/2007 6:57 PM (GMT -6)   

hey Lou,

I am so sad for you.  I am right there with you on this.  I work in a big busy elementary school and the reactions and comments I get can be completely bizarre.   I too am considering a counselor.  I am so sick of this disease and the way people treat you and the way good friends change when you get diagnosed.  It sucks.  I can't really help you, I just thought you would want to hear that I am going through the same sort of thing.  Keep me posted on your hunt for a good counselor and whether or not it is helping.  Hang in there, girl.  I am pulling for you.

Love and prayers, 


Gretchen
 
diagnosed: MS  July 2006
rx: copaxone


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/29/2007 7:37 PM (GMT -6)   
I've said this before, here, and in other places. No one...NO one...cares that you (we) have MS. They don't want to confront having a chronic illness, they don't want to deal with a possible negative outcome (death..although death isn't common with MS, it is with other chronic illnesses, and they don't make a distinction between MS and something terminal).  People without a chronic illness, without a long-term disability, don't understand..and generally don't want to understand...what we have to deal with every day, just to get out of bed, sometimes.
 
Leaving literature around may make YOU feel better...but it likely will do little to educate anyone. If there WAS someone in your office who REALLY wanted to know about you, they would have asked by now, in a discrete and distinct way, so that you'd know that they really care.
 
When people ask you, "Hi, how are you?" they don't REALLY want to know about every thing that might be wrong with you that day.  All they are doing is starting a conversation. Your reply should always be, "Fine, thanks, and you?" and move on to something else.  If you instead respond with a litany of what is ailing you, they'll first get bored, then get put off, and indeed will start thinking of you as a hypochondriac, or crazy, or a whiner, or complainer.  So the only good response is, "Fine, thanks, and you??" and let it go.
 
Indeed, if you really are uncomfortable with that, then a counselor would be a good listening ear. They're used to talking about and hearing about chronic illness, and won't be put off. And maybe you'll feel better.  And yes, in time, you'll find a way to balance your health issues with "living a normal life like you used to", and it won't be a center focus of your conversations. Then you can come out of your office and interact "normally" with the "normal" folks who work there. And you'll all feel more comfortable.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 5/30/2007 1:26 AM (GMT -6)   

Hi guys...

I have to agree with Uppity here.  It's true, I've found no one really at work wants to hear about our struggles unless they are a good friend, or it will impact them in some way.  I have adopted the attitude of "if they don't ask, don't tell" unless of course they need to know, like my supervisor. 

I work for a large company and have been gone for the last two weeks.  I went back today and a couple people asked where I've been and I answer, but don't tell too much unless they prod.  

1. it makes them uncomfortable

2. it makes me uncomfortable

3. it alienates them from wanting to chat with me later on

4.  it makes me feel "special" when I am trying so hard to be my old self

5. it brings me down and reminds me I have a problem.. I work for an escape and don't want it to dampen my spirit more than it needs to

6. I don't want people to lose confidence in my work

I could go on, but I won't.  If I'm having a rough day, I will call my fiance and tell him.. then I feel better and don't feel compelled to dump on others who don't understand anyway (I did this for quite a while and never got what I needed so it was fruitless for the above reasons).  Having said that, it does feel really good when people ask and are genuinely interested and care.  But for the most part, everyone is dealing with their own life struggles and just want to hear happy things, or gossip... at my workplace anyway.  So I walk in with a smile and try to be the positive person that everyone wants to have around.  :-)

Shar

 


Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 5/30/2007 1:38 PM (GMT -6)   
Wednesday p.m.
 
Hello Madlou:
 
From what I have observed, most people do  not understand what MS is...much less can sympathize with the symptoms.
 
From my experiences, your better friends will stay by your side...and others.... well...those are the types who think MS is contagious.
 
Great luck.  There are several-web-sights which fyully explain MS.  Maybe that would help.
 
John

snowdog
Regular Member


Date Joined May 2006
Total Posts : 137
   Posted 5/31/2007 1:26 PM (GMT -6)   

 

In my experience............ditto UppityCats. !!!! People do not care. And the ones that say they do, are hippocrites. They all mean well.......but nobody knows what this is like.....except those that have it.

Plain and simple.

It doesn't mean they don't have empathy or feel sorry for us, but they don't care much either. It is hard enough to get spouses and loved ones to TRY to understand, much less strangers that are scarred to death we could give them our problem.

It took me a year and half to get my boss to treat me like a human being, not a disease. I am not even trying with my co-workers.

Dog 


madlou
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 5/31/2007 4:10 PM (GMT -6)   
I've made an appointment with a counselor. I worked with her a couple of years ago, before I knew I had MS. She popped into my head when this started. When I first met her I noticed that she had an odd gait. At some point she told me that she'd had a hip replacement. I'm 55 and I think she may be about that age or younger. So i think she knows something about diminishment and pain. I thank all of you for validating what I've fel. Uppity, we are so blessed to have you as a member of this community. Thank you for your honesty. I try to let things in and it helps to hear this. i'm not judging my friends. I realize they have their own issues to deal with. And maybe I crossed a comfort boundary.
Rebif 44 mcg x 3; lyrica; ambien


DFC
Regular Member


Date Joined Apr 2006
Total Posts : 136
   Posted 5/31/2007 5:11 PM (GMT -6)   
Hi All,
I think the most painful part is that our "so called friends " often desert us. My true friends, I know who they are!! Without their love and care I would really go bonkers. We live in a narcissistic world ( the "me generation" is definitely trying to run the ship) and I agree that no one really cares. I was brought up in an era that the sun didn't rise or set on my butt. Having said that we all need to know that someone sincerely gives a hoot about us. Most of us try to make it through the day trying to keep a smile on our face. By the end of the week I am at the end of my tether. We have to learn to live with our problems and other people's attitudes and treatment of us. That sucks with all the problems we have that are not of our own choosing. However that is why I feel we have to tell those that do understand us. Those that are not interested in the emotional fallout that many of us deal with everyday can choose to not read or respond to our posts. The emotional side of this disease is devastating, especially if we have no monetary support (loss of job, spouse,etc),no family to lean on (and I mean for good times, get togethers...not necssarily to sob or vent),or no close friends to lean on that truely care about us. People can say that no one cares or understands but we are supposed to be social beings.. .. we need the group to make us feel we belong. So lets support each other and to heck with those who do not give a darn. We need to let it out once in awhile...its not a pity party...it is understanding that we are hurting and once in a while we have to cry "Uncle!!" Enough!!! Then we do what we do best, we get up and start all over again. Now that I have vented it and got it out of my system...

I believe that a councillor is an excellant idea, especially if that councillor truely understands the issues. One on one councilling is the best idea for me, that and this forum. Others may like group sessions or MS Society meetings or church groups...what ever best works for that person. We should try to find what works for us and the only problem is that we are incredibly strong individuals. We don't give in or give up easily. But sometimes we just need to throw in the towel and let someone else be strong for us if even just for awhile. One of the lawyers that I freelance for once told me no one likes defence lawyers or our judicial system until we personally need them. That is why I feel that this forum and MS societies and councillors are what we need just as much as our meds. Empathy is a long way from sympathy and who better to find support with than those who really understand. For all of you that are hurting (myself included) someone does care...us.
Dale
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