Wednesday, February 6, 2008

Who do you tell, when do you tell, and why do you tell others you have MS?

Multiple Sclerosis is a mysterious disease.

The cause is still unknown although there are some 'autoimmune' theories. The progression of the disease is unknown for an individual patient.

What happens to one patient does not happen to all patients.

The impact of MS on your life is unknown at the time of diagnosis. The impact of MS on your relationships and ability to protect your financial security is feared by most patients at the time of diagnosis.

Fear may be the one thing which uniformly affects MS patients.

So with all of the mystery, the vast unknowns, and the looming fears, multiple sclerosis remains a disease not well understood by those unaffected and not well represented by those affected.

"You don't get MS until you get MS," so the saying goes.

In a very real way, MS can be an invisible disease without a public face; and with the use of the recent disease-modifying drugs, fewer MS patients end up in a wheelchair or severely disabled. However, the National Multiple Sclerosis Society is working to put a face on MS through
[I have not put my face or story on their wall, but I should.]

Fear of the future + fear of repercussions
= Silence about the disease

So to our questions:

The First String Players:

Who do you tell?

Certainly those closest to you should know - your immediate family - your fiance - your other doctors - a trusted friend??!!!

When do you tell?

Perhaps after the diagnosis is confirmed - at your next (non-neurologist) doctor's appointment in the 'any changes since our last visit' time - and for children, when you feel it can be understood without too much fear - and most importantly when you are ready!

To help children, the National MS Society publishes Keep S'Myelin, a colorful newsletter filled with stories, interviews, games and activities that highlight a variety of topics about MS. The Society also offers an interactive version of Keep S'Myelin online. Go check it out.

Why should you tell?

As humans, we each have a deep need to be known, to be liked and to be loved for who we really are.....a need often not satisfied. The ability to be yourself, to be genuine, to be unguarded and not to have to play a role is one of the most treasured gifts you can award yourself. Although this type of openness and understanding can be lacking even between husband and wife or parent and child, those are the very relationships where the need to be truly known is the most intense.

When one family member has MS, the family lives with MS. Engaging members of the family in sharing household burdens is an absolute must, ie. children can take more responsibility for laundry or preparing food. An appreciation of the physical and emotional issues which the MS patient may be experiencing is necessary in approaching this disease together.

One goal. Many hands. Share the Burden.

Having good friends who know about your MS can be essential. A support group of people who share similar concerns, or peer counselors (kinda like some of the friendly MS bloggers around here) can provide relief, understanding, and direction.

The Second String Players:

Who do you tell?

Friends, co-workers, or maybe your boss. But keep in mind that once the 'secret' is told, it is impossible to un-tell it.

Consider this, if you wish to encourage co-workers to walk with you in the MS Walk (or with Team Brass & Ivory), it is not necessary to reveal that you are the one with MS. If people ask, you can always say that you have a very dear friend who has MS and you are doing this for him/her.

When do you tell?

Only when you are ready and prepared!!

If your MS has not created any limitations for you, you may decide to say nothing at work. But if you feel confident that disclosure will not be used against you, and that telling your boss and co-workers would be better for you than remaining silent, then you should tell.

Why do you tell?

Before disclosing your MS, you should weigh carefully what your disclosure will be. An employee (or job applicant) does not have to give a diagnosis. It is acceptable to describe your problems as being due to “a medical condition.”

If your job performance is threatened by your symptoms—for example, if you need time for a nap, or a workspace near the bathroom—then you need to seek an accommodation. Under the Americans with Disabilities Act (ADA), most employees are guaranteed workplace adjustments, as long as the accommodations don’t present an “undue hardship” for the employer.

Be aware that ADA protections apply only when the employee discloses disability-related problems on the job. With or without full disclosure, the employee has to discuss the problems in order to obtain accommodations. It is up to you, the employee, to find out with whom to meet for this discussion and to request a meeting. You must be ready to suggest the possible solutions as well. Be prepared!

The Out-Fielders:

Who do you tell?

The lady next to you in the checkout line at the grocer's? Other parents at your child's school? How about the World?

Why do you tell?

Perhaps you wish to lift the veil shrouding the vague image of a person living with MS. Perhaps you seek to become an MS advocate and to help newly-diagnosed patients who need support and comraderie. Perhaps you just don't like keeping 'secrets' and think nothing of sharing information with others. Maybe you fear not being known for what makes

After I was finally diagnosed in October 2005, one of the first things I did was to send a newsletter to my students' families explaining the diagnosis and reassuring them that I would continue to teach as usual although I might need more time off. Many of these families have known me long enough to know that something was going on with me. I am not one to cancel things at the last minute and due to overwhelming fatigue, emotions, and not fully recovered from the last relapse, I was doing just that. The response I received was both touching and enlightening.

1. I discovered that the father of one of my horn students has MS, takes Betaseron, is blind in one eye, and has been living MS for over 20 years.

2. One father told me how brave I was to reveal my diagnosis. He has a connective tissue disorder and has not told his co-workers though he does need to be cautious with his environment at times. He invited me to participate in a monthly support group at his church for persons living with a chronic illness.

3. One mother told her children that I was 'sick' and has them pray for me every night, but she didn't tell them that I have MS. They only knew that I was 'sick.' She didn't want to frighten or worry them.

4. One dear mother was tearful when she gave me a letter written to myself and the flute teacher of my piano student. The flute teacher (also a band director) has MS and uses a scooter named 'Red Ruby' to navigate the long halls at school. This mother was sad that two of the treasured people in her life had to fight this terrible disease. I ended up consoling her and then contacting the other teacher. She was nice to speak with.

But I did not tell my fellow musicians for fear of prejudice. When I needed a rigged-up strap to hold my horn when my left arm was too weak, I claimed some 'nerve problem' when asked about it. When I had just completed a round of IV Solumedrol and had to play an orchestra fundraiser, I 'hid out' on 4th horn and basically went through the motions.

After a year or so I became comfortable enough to reveal my MS to a few hornplayers while playing a concert series at the National Gallery of Art. Unfortunately, one of the players was someone who also played with the Fairfax Symphony (one of the groups I had performed with for over 6 seasons), I haven't been called to play with them for 2 years now.

When do you tell?

Think carefully...when you are ready?!!

When you are able to take MS in stride and accept it as being part of your life, for good or ill, then you may be better prepared to reveal your 'secret.'

But most definitely, if you are applying for a new group health insurance policy, do not lie on application form. You will automatically disqualify your new insurance policy. Answer the questions asked truthfully and accurately.

The whole world doesn’t need to know...
unless you want them to know.

A future post will address the emotional uncertainty of MS from a patient's perspective.


  1. Hi Lisa,

    Excellent advice. My sister has MS and she refuses to talk about it with any of us. However, she recently told me that she has an online support group that she finds very helpful. I guess sometimes it is less painful to remain anonymous - or to share with others that have been there themselves.

    Keep up the great work.


  2. This is one of the best posts I've ever seen, a really important post. Thanks so much for writing it.

  3. Hi Lisa: I have addressed this very topic in my August 2007 post TO TELL OR NOT TO TELL, which was highlighted on Carnival of Bloggers.

    Thanks for bringing attention to this widespread problem.


  4. Lisa, this is excellent! With your permission, I'd like to highlight your article and post a link on the MS forum I belong to - it is UK-based but happy to have overseas members. Let me know at the usual email addy - thanks. You done good girl!

  5. Who to tell is always tough but as the years go by, I don't worry as much.

  6. My father has had MS for over 30 years, and he had the progressive form. I've been watching him get sicker and sicker over the course of my lifetime...and it's hard to watch someone I love slowly lose his abilities and his dignity. But still he perseveres and lives life as fully as he can.

    Thank you for this blog post.

  7. When I was first diagnosed with Atypical MS - I told my mother who called me "useless." She then told my ex-husband to leave me because I was "useless to him." My mother had a serious pathological disorder and that was the straw that made me look long & hard at her, my upbringing etc and how it contributed to my illness.

    Some friends were great although about 60% of them stopped speaking to me. I kept cancelling things, forgetting things and had to stop working. After about 6 months I felt like a pariah. Since then I have made a whole new set of friends who also have issues with various illnesses and are a lot more understanding.

    2 years after my diagnosis I got pregnant and had twins. My marriage effectively ended a few months after I gave birth and my health took a serious downturn. My children know I am sick (they are pre-teens now) but not what with. I don't want them burdened right now. They were the best things that ever happened to me and as hard as single parenting with a disability is - I bless God every day that he gave me 2 such wonderful children.

    This is SUCH a great post - I am linking to it and hope more people read it.