The Guilt Game

Your excellent post begs another question.  Do you find that the fact that you have Multiple Sclerosis seems to give people the idea that they have the right to ask you questions that in any other situation would be considered too personal to ask?  Or that people feel not only able but expected to make comments on your illness, how you look, act, or feel about it, and what you should be doing about your illness?  I would be these questions would be appropriate for anyone with a visible chronic condition.  I am often amazed at the questions a perfect stranger will ask me, and expect an answer or even a full discussion, about why I am on my scooter and then about my condition.  Depending on what is asked and how it it is asked, and the overall attitude of the person I will either not mind and have a short conversation, without giving too much information about myself, or I will say something like, "I can't walk," when asked why I am in the scooter or if a person is offensive, and they can be, I just say, "Excuse me, I am reading." This doesn't happen often, but I don't like being challenged or having to defend myself.  And frankly I don't care how much better or worse their Aunt Tilly's girlfriend's sister's aunt looks even if she does have MS.  Denise

Ah, yes. Sentiments I have expressed many times as well. I belive that guilt should just be added to the list of MS symptoms. If you don't feel guilty all on your own, someone else will do their best to make you feel guilty.

Positive attitude? It sure helps. It helps us and it helps those around us. But it will not cure MS and it will not prevent MS.

Personally, I think I have a wonderfully positive attitude most of the time. It certainly makes life with MS more bearable. However, it doesn't stop well-meaning folks from telling me that I'll do better if I just keep a positive attitude! In fact, it makes me do a slow burn.

Life with MS seems to invite a lot of advice!

Good post!

Amen.  We have all been there in varying versions.  For instance, if you don't take drugs, you don't want to get better (as if one could get better from MS).  If you take drugs, you are putting your faith in doctors instead of God.  They always have an answer for everything, don't they?  Those who don't have the disease, I mean.

This is so well said.  And to feel guilty is to imply that there is a right way and a wrong way.   If it were that simple... we would all just do the right thing and ... all our troubles would disappear ... no more chronic illnesses... cause... well, we are right. 

Only the wrong people have them anymore?  I think not.

Last I checked, there are no sure cures... just lots  trying, coping, and hoping.  And living.  It is important we keep doing that, and enjoying it too I hope.  We are not experiments, or points to be proven. We are us.  I am me.  You are you.  Just like always... somedays harder than others.

So, you're saying that when you find out you have a chronic illness you are the same person as you you were before discovery? The same intelligence? The same craving for a chocolate iced donut? Someone should publish this. :)

All you say is true, somehow you're supposed to transform, get up on the other side of the bed now, not be you anymore. Curious. People in hospitals for an serious illness find out very quickly they are not them anymore and will have it pointed should they not act different now.

You wrote this with even more authority than usual! I should memorize it.

This is such an interesting discussion for me as I think this issue relates to all illnesses.  For example, I've had no experience with MS in my family or with friends, but extensive experience with cancer in both groups.  I am wondering after listening to this discussion whether I have had enough respect for each individual as they made their choices.  Something for me to think about it for the future.  Thanks.

www.singleforareason.net

Hi there...I'm catching up on blogs and saw this one and knew I could relate.  Thanks for talking about this because we get guilt trips from others (docs who are sure they know the way), family (who really think they know what's best for us) or the MS patients themselves (who sometimes really, really think they know because if it's working for them, it HAS to work for you, right?)

I, too, decided not to take any medications.  I tried them for 6 months and hated the side affects.  And I was having just as many relapses on the meds as off.  But, I have a doc who loads the guilt about this as well.  WHen I recently asked about when I would be getting the next MRI (1st one was Feb. 2007), he said 'oh, it won't matter since you aren't on meds...what would we be measuring?'  Ugh.  I need a new doctor.

I have tried the MS diet, not Swank, but one from a really good book about the environment, toxins, etc.  However, I tried to give up everything and I mean everything...sugar, dairy, wheat...and the list went on and on...and I fell off the wagon quick.  This book also mentioned getting my fillings removed.  Yikes.  I went to see a naturopathic doctor who made me feel like I was causing my own disease by not following the strict program and swallowing 5 fist fulls of herbs and vitamins.  So now I do what I can do to change my diet and life style and I try not to sweat the small stuff. 

I love reading your stuff!

Kathy