Diagnosis, Denial, Due Diligence

So you’ve been diagnosed with multiple sclerosis. Now what?

Denial. My own lasted only a few brief moments. The odyssey to diagnosis was a difficult one, and I quickly embraced the sweet relief of finally having an answer. But then it hit me — I have MS. I have MS. I have MS. Me. MS! There was a surreal quality about the whole thing. Discombobulation sums it up rather nicely.

What do you do when everything you know about yourself changes just as you are hitting midlife? How do you plan for life’s second half with a body you’ve never met before? How do you cope with a relapsing/remitting disease that shows itself on some days and plays hide and seek on others, never knowing which it will be? How do you pull yourself together?

One piece at a time.

Realizing that I have to live in this body, whatever state it is in, I decided that I’d better make my peace with it and get back to the business of living, even while fighting the war.

That’s not to say that my reaction is the “normal” one. We all come to this place differently, at various ages, with all manner of life experiences, other health problems, family conflicts, work situations, and financial status. Who is to say what is normal? The important thing is not to stay frozen in place too long, but to press ahead.

Then came the questions.

Why did this happen to me? The most puzzling aspect of all is the why. Researchers have yet to agree on a cause, and recent discoveries are not without controversy. We’ll be taking a look at that later this month in the Causes section of Care2.

What is it like to have MS? The MS newbie trying to pin down a prognosis soon learns the futility of the exercise. Unpredictability is about all you can predict about MS, but that’s not bad news. While some people with MS have very disabling symptoms, others have only minor symptoms and live long, relatively healthy lives. Upon diagnosis, that knowledge is cause for great hope.

Who should be told… when and how much? That’s an intensely personal decision, one that needn’t be rushed. I wanted to tell family immediately. There was no death sentence hanging over my head and I wasn’t contagious, but it felt like important news, even though saying the words “I have MS” out loud made it seem even more true.

Telling people in the workplace is a big decision. If your symptoms don’t affect your ability to do your job, it is not a legal requirement to inform your employer or co-workers. But if you need special accommodations, you should familiarize yourself with the Americans with Disabilities Act and how it applies to your situation.

As soon as the dust settles, it is time to get educated about MS. Up next week here in Healthy & Green: setting up a support system, research, and putting yourself in the driver’s seat. It’s all about due diligence.

Multiple Sclerosis Education & Awareness Month

Throughout MS Education & Awareness Month, I am offering glimpses into my own life with MS. While there is no such thing as a typical case, those who are familiar with MS will nod in recognition. If you are not familiar with MS, please allow us a few moments of your time during MS Awareness Month Please look for the rest of my story this month here in Care2 Healthy & Green Living and more news about MS in Care2 Causes. Thank you.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.

33 comments

June H.
June Higgins6 years ago

I still continue to have days of anger. I continue to try and fight it off. I know that anger serves no purpose, but to undermine progress. I have recently started meditating. I am not very good at it, as my mind seems to be constantly bombarded with thought. I'm improving slowly. I went to see a leading MS specialists and he told me to start Yoga. Yoga, because of the deep breathing keeps the disease from progressing. He said that it was scientifically proven that people who do Yoga regularly show no new lesions on the brain and spinal cord. Well, the lesions I have cause enough problems, so I started. I can only do the exercises sitting down. It makes me feel better to know that I am doing something to stop the progression. The proof that oxygen to the brain helps, is just another reason why CCSVI should be a priority. I continue to believe that this procedure will improve the lives of millions. I read on the progress of those who have had the procedure in a clinical trial. It's very impressive. Let's keep pushing for CCSVI, and Ann, keep up the good work.

Rachel O.
Rachel O.6 years ago

Lisa F...I can understand your frustration at the possibility that your daughter may have M.S. I sincerely hope that she does not but if it is the case, remember your attitude towards your own illness & towards her having it will contribute quite a bit towards how she herself views it & therefore manages it. A good approach from the beginning can make such a difference. I know this from personal experience. My mother has M.S. & has done pretty much all of my life. I was only a year old when she was diagnosed. I, myself have M.E. also known as C.F.S. Had I not had such a good example from my mother in relation to her attitude towards illness I am sure I would be far worse than I am today. Try stay positive! Best wishes to you & your daughter, Rachel. x

Kaye Skinner
Kaye S.6 years ago

One day at a time.

Abo Ahmed r.
Abo r.6 years ago

Noted thanks

Christin Benoit
CHRIS Benoit6 years ago

Thanks, Ann! Always look forward to your blogs... can't wait to see what's next!

Many people don't know about MS and because the life expectancy of people with MS doesn't change much from the rest of the population, it seems that we are put on the back burner - you're not dying so the attention goes to more severe illnesses and we get forgotten. The focus of research & treatments are slow. I'm still fighting for CCSVI - I want to have it so bad!

MS sentence = Life sentence without parole

Michal Ciepielewski

good to know,thanks:)

Tekla Drakfrende
Tekla Drakfrende6 years ago

thanks for sharing

Miriam Lesvy Coello Franc

Thank for sharing

gerlinde p.
gerlinde p.6 years ago

thankyou for sharing.

Lisa F.
Lisa F.6 years ago

I never got to the denial stage. I went straight to the bitter angry stage. And this lasted for close to a year unfortunately. Mostly mad as my doctor kept saying nothing was wrong with me and I was a hypochondriac. Still mad at him. I was over the anger and became an advocate for anyone needing help and this has been fulfilling for me in so many ways. Now I am starting to have more anger as my 19 year old daughter may now have MS too. What a roller coaster of emotions.,