Do You Keep Your MS to Yourself? 

I realize that many of us don't talk about our MS anymore, because we've heard too many insensitive or downright stupid, demoralizing  remarks.

Here's what some people with MS have had to say about who they talk to...or don't talk to about their MS and their reasons why.....

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  • I feel as if I haven’t yet found a really good place to talk about my MS and symptoms especially since having my son a year ago. I have connected with a few groups on line but still it doesn’t feel quite satisfying. I tend to only reach out when I am feeling really upset and tearful about the MS. I do tell my partner about any symptoms but I do feel as though I am grumbling and I don’t like that feeling. But it does feel important to be able to talk about it. I really appreciate reading other people’s accounts of the difficulties of living with MS.
  • Honestly, I have nobody I can talk to about my MS. Nobody gets it, so I figure why bother. My teenagers just think Im complaining if I try and talk about it. I was diagnosed 6 months ago and I’m very symptomatic. I’ve found a couple websites with chat room
  • I’ve been diagnosed 5 years. I never talk to anyone about it. It seems pointless. Everyone has their own crosses to bear and few really know what MS is, much less transverse myelitis. I told my very immediate family at the beginning, as that is appropriate, so they understand why i choose not to do some things i used to do before; and it has never been discussed amongst us since. I especially have not told my in-laws; my brother-in-law has a big mouth and I really don’t want to be treated differently.
  • I try not to bring it up anymore to strangers, but I find myself doing just that on my “bad” days. Other than that, my friends don’t want to hear about it. My cognitive problems have affected my friendships and I no longer contact some of them as I was told that I repeat myself. This has been harder that the disease itself.
  • I tried going to a group for MS, but I felt very out of place as I wasn’t in a wheelchair and couldn’t relate to what was, or wasn’t, going on.
  • It can feel very lonely sometimes with all the weird and wonderful symptoms that can’t be explained.
  • On the beginning I told my friends that I was diagnosed with MS and after the initial comments I received I stopped talking about. I found out that most people do not understand what we go through on a daily basis and everyone can see how my mobility has gotten worse. When ask how I am doing I just say that everything is status quo and leave it at that.
  • I’ve pretty much given up discussing this with others who do not have the disease. It’s pretty much pointless, because it is too difficult to describe. Plus I have found that certain people think that I may be exaggerating or “faking” my symptoms. So, I just hold my feelings inside for the most part.
  • There really is no one to talk to because I am trying so hard to maintain normal work status, so I can keep benefits, so I can pay for the meds. A few people know but I do not want to be the focus of attention. Last time I went to the eye doctor, the receptionist asked, “How the MS thing was going…are you better yet?” It’s not the popular disease so I just keep quiet. It makes people uncomfortable to know we do not get better…yet.
  • Have been diagnosed MS for 30 years and horribly undiagnosed for 10 years. I lost my husband and my self-esteem. You may be surprised to know that most people don’t know what MS is. I get replies liked “Oh, that’s what Steve Hawking has.” I can’t be bothered explaining.
  • I didn’t do it on purpose, I just didn’t tell anyone except those close to me for long time. No reason, it just didn’t seem anyone else’s business. Now in my 50s I am on disability pension, spend lot of time in bed and am homeless, staying at my 80-year-old mother’s home and I do tell some people when necessary.
  • When I went on Tysabri infusions I was astounded at how good it felt to talk to fellow MSers [at the infusion center]. I stayed on the drug cause I loved going in once a month to chat with them, hear their stories, see their improvements, laugh together. I miss that now and asked if I could go in and just have a saline infusion.
  • I agree with most commenters. The less said, the better. Because many of us have “invisible” symptoms, or we can efficiently mask them, most people are wrapped up in their own lives and don’t really care. So, carry on, all! Vent when needed, ask for help when necessary, be strong and self-reliant, avoid being a pain. Chances are, other folks have stuff they are dealing with, too.
  • Like others answering this question, I have no one to talk to about MS that would understand, without those people telling me of their aches and pains, some saying they think they have it, or know someone who has it. I told my brother when I was first diagnosed in July 2007. My last invitation to visit with him was in December 2007. I call him now and then, but he has basically ignored me.
  • I have no one to talk to about it my MS. If I do start talking about it, people just stop talking to me (including my husband), in the hopes that I will stop talking. I do attend a self-help group, and I so look forward to that each month because that is where I can relax and be understood. When someone in group gets upset, you can count on several voices saying, “That is what we are here for!”
  • I hate talking about MS and have done very little “sharing” about my MS. Few people understand its complications, and especially the fact that almost all people with MS have a different combination of symptoms. People seem happy to proclaim that you look so good and seem to handle your MS well. Little do they know what we struggle with daily and how it is difficult to remember what “feeling well” for me feels like now.
  • Well, as they say, misery loves company. While I’m sorry to hear that so many of us are in the same or a similar boat, it seems to be another somewhat common thread. For me, it’s a killer not being able to talk about it. I guess I’m a communicative type of person and I also believe that if you want to talk about it and can’t, which is my case, it becomes bottled up inside, that isn’t good. For me, like others, I keep it all to myself. I understand that others have their own problems and not everyone (well hardly anyone) wants to hear about it or cares.

Source:  Julie Stachowiak, Ph.D

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It seems to me that some of us with MS enjoy talking to other people with MS, while others don't. And either way is perfectly understandable.

As for me, personally, I still cannot understand the ignorance, disinterest, apathy and even shunning from those closest to us.

The rejection from many of those I love and care about because I had MS was beyond heartbreaking....but, in the long run I believe that will be for them to deal with at some point.

The way I see it,.....UNDERSTANDING and COMPASSION are the key words missing here.  They are few and far between in the world of MS we live in.  But, what we need to remember is that we are all in this together..... we are here to help and comfort each other, and in the words of one of the commenters above ....."That's what we're here for".

Enjoy!

Until next time,

Sue Ellen

P.S.   If you'd like to share your story with our MS Group, we'd love to hear from you!  Send it to: sueellendickinson@gmail.com ......and put 'My Story' in the subject line.

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Also, don’t forget to visit my website at:  http://www.nomorems.com

If you don’t have your copy of my book yet, “No More MS, My Journey Back To Life”, you’ll find it at my website http://www.nomorems.com

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Your thoughts and opinions are very important to me, so send your emails to me at sueellen@nomorems.com

Disclaimer:  These statements have not been evaluated by the FDA.  This product(s) is not intended to diagnose, treat, cure or prevent any disease, but rather is a dietary supplement intended solely for nutritional support.  The information provided in this newsletter is for informational purposes only and is not intended as a substitute for advice from your physician or other health care professional or any information contained on or in any product label or packaging. You should not use the information in this newsletter for diagnosis or treatment of any health problem or for prescription of any medication or other treatment. You should consult with a healthcare professional before starting any diet, exercise or supplementation program, before taking any medication, or if you have or suspect you might have a health problem. You should not stop taking any medication without first consulting your physician.

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