Reactions





When people find out I was recently diagnosed with MS, there are quite a few different reactions.  I need all of them.  Well, most of them.  Sometimes I prefer one type of reaction over another.  Because I can react to the reaction positively or negatively.  Example.

Me:  "I have MS."
You:  "Aw!  Well don't worry, I have a friend who has MS, has seventeen children, and runs marathons!"
My reaction #1:  So maybe I will be able to have children without passing this disease down.  And maybe I will get to jump on a trampoline again.
My reaction #2:  Fan-freaking-tastic.  My life is not allowed to change.  I have to follow a high path without acknowledging my disability.  Yeah, not happening.  Good for your awesome friend though.

Note that the problem here isn't what you said; it's my reaction to what you said, which could be positive or negative, depending on how I feel that day.  Here are some more examples:

Me:  "I have MS."
You: "I am so...so, so very sorry.  Oh no, oh no."
My reaction #1:  Ahhh...thank you.  You are sad for me, therefore it is okay for me to feel sad too.
My reaction #2:  It's not a death sentence or anything...gosh, I'm really doing fine.  I feel bad for making you feel bad.

Me:  "I have MS."
You:  "Have you considered alternative medicine?  My friend started eating only rye, and went to an acupuncturist and now she's fine!"
My reaction #1:  You are concerned for my health, and trying to help me based on your own experiences.  That's so sweet.
My reaction #2:  Do you know what kind of damage I can do if I don't get on MS drugs right away?  I don't have time to experiment around with ginger extract and meditation!

Me:  "I have MS."
You: "Well, at least you have a diagnosis, and a good support system, and at least they caught it early, and at least you still have good use of your arms and eyes and cognitive function."
My reaction #1:  Amen!  I have so much to be thankful for!
My reaction #2:  Forgive me if I'm not brimming with happiness.  Can't I just have a little pity for the way my life is changing?

Me:  "I have MS."
You:  "Are you sure it's not something else?"

To be honest, that last one is going to receive nothing but a negative reaction from me.  It makes me feel like I have to defend myself.  "Would you like to see my MRI scans and the damage on my spinal cord and in my brain?  Would you like my doctor's phone number?  Because I did not self diagnose.  I actually saw a well-known neurologist."  If I hear this, I feel like you're doubting me - especially if I offer you the proof and you counter, "Well, did they do a spinal tap?  Did they look at your ____ levels?"  My friend, I know you hope that I don't have the disease.  I wish I didn't.  But you are not my doctor.

But most things you say, are neither right nor wrong.  Sometimes I'll be "in the mood" for it.  Sometimes I won't.

How can I help?

I learned this awhile ago when I started hanging out with my disabled friend Heather (who has a disease similar to MS).  Offer specific things instead of saying, "Call me if you need anything."  My needs could be so monstrous that you have no idea what you're offering, and thus I won't call you at all.

But consider what the needs might be, consider what you are able to give, and then offer that specific thing.  For example:

  • Doing one load of laundry start to finish while chatting.
  • Cooking a meal at my house with my ingredients.
  • Sweeping and mopping the floors.
  • Taking me out somewhere (I can't drive, and I need a wheelchair for longer distances).
Sometimes I'm up for company and sometimes I'm not.  It is really helpful if you ask what would be a good amount of time to stay, and also if I'm up for conversation while you help me, or if I really prefer to zone out on the computer.

To wrap up:  My health-challenged friends, do you agree with this post for you?  Do you have any different views, insights, or anything to add? 

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