I clearly have no problem with people knowing I have MS. I mean, I can put a face on MS that might be different than what you might expect so it’s surprising to everyone I tell. The reactions of others have been interesting to say the least. The reaction to it is really the only reason I considered keeping this private. If I hear another story about how (insert family member) that died of MS, I might explode. The life expectancy for someone with MS is 95% of the time the same as someone without MS.
I think everyone knows one person that has MS and they can’t do normal daily activities. The problem is that there is another three with MS out there doing normal everyday things with no visible disabilities. Those folks are the “normal” face of MS. They aren’t as open because well, they are out living their lives and don’t have time to deal with other peoples emotional baggage. There is no reason to tell me I will be fine or that it’s going to be ok if I am crying. Don’t argue with me that people live normal lives with MS. Don’t invalidation my sadness. I am allowed to be sad. Not only am I allowed but its normally, accepted and ok. Perfectly ok.
With that said, I am a logical soul and realize that I will be fine. I have a wonderful support system and I am still the normal girl that I was before. So your question might be, how SHOULD one reaction to this kind of news from a friend or loved one? Well, I have a few suggestions:
- Keep your personal NEGATIVE experiences about MS to yourself. It’s not helpful, really.
- Research what MS is. I had a coworker later tell me they were reading about MS and I was so comforted by this for some reason. Sort of like he understood what I am or will be going through.
- Allow them to have emotions and sadness. Keep your comments about how it’ll be ok or it’s not that bad to yourself. You are just uncomfortable with sadness and really, sadness is ok.
- And finally, one of the best things that has happened to me is the ability to connect positive people living their lives with MS.
Of course, I am not a professional in this type of thing but this is just my experience with it.
In other news, I got my MRI and here is a picture of my BIG brain: http://msgirl.org/images/brain0508.png. Do you like my white spot? 
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4 responses so far ↓
1 Diana - "gkygrl" // Jun 3, 2008 at 1:15 pm
We DO have pretty brains
Thanks for visiting my blog and commenting. Get through this the way you need to … for me … laughter helps a heck of a lot.
Take care!
Diana
[Reply]
ninareply on June 6th, 2008 7:33 pm
Laughter is the key. I need to keep my silly boyfriend around more to make fun of my lesions. It totally lightens up the situation and makes things less serious.
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2 Nadja Tizer // Jun 6, 2008 at 6:05 am
I found you on the Carnival and I couldn’t agree more. My husband jokes bitterly about the million and one people who had a friend with MS. I am fed up with people asking me when and if we are going to therapy. They can go jump in a lake. I have claimed before and will again, only people who have MS really know what it’s like to have MS!
[Reply]
ninareply on June 6th, 2008 7:34 pm
So true. I think it really helped my support system to hear that there are people just living with MS and not dying. Everyone hears about that ONE person and everyones opinion of MS is based on that. I am happy that I have changed the ‘face’ of MS for some folks around me.
[Reply]
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