#005: Whom do I tell about my MS diagnosis?

This time it’s about the pros and cons of who you tell about your MS diagnosis in your family, circle of friends, love relationships and work environment.

I believe it’s up to each person to decide. In the post, I share my experience with you.

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Sharing MS diagnosis with family and friends

In my case, when I was diagnosed with MS in the summer of 2004, I told my family and all my good friends.

Afterwards, there were quite a few people who had doubts and who fueled my fear: „Remember, you have MS, you’d better not …“. I heard this saying in many different variations and it rarely made me feel better.

Or I was asked with a pitying face how I was doing. But my answer, „I’m fine, thanks for asking,“ was not believed. For some people it was almost unthinkable to believe me that I continued to actively participate in life, went to sports, continued to study and had plans for my future. The dear question, sometimes seemed to predict only a scary future prospect. It can’t go well for me much longer, was written on some faces.

Don't let the MS diagnosis scare you

At that time it was much more true than today that only the particularly bad courses were known. Today, fortunately, there is more and more education, so that at least the interested person quickly realizes that MS is not called the disease of 1,000 faces for nothing. Because there is a multitude of symptoms, combinations of these and several courses. Multiple sclerosis is different for everyone and more and more people are being diagnosed with a mild form of the disease.

Pro secrecy of MS diagnosis

At that time, I quickly decided to keep my diagnosis to myself and also asked all confidants to protect my privacy. Because I didn’t want to be pitied, patronized or discriminated against. Who knows whether I would have been sent on all those trips abroad to Asia if my boss had known about it. Maybe I wouldn’t have been taken on after the trial period. Because even some doctors, whose main focus is not the disease, only know the very negative courses.

As with the question about an existing or planned pregnancy, in Germany you can simply lie at this point if the employer sends you for a medical check-up. You have the right to do so. Please check for your country, if it is the same there. I guess, it is okay in most places.

The only thing that matters is that you are not endangering yourself or others with MS and its accompanying symptoms.

My job took me to Japan, South Korea, Turkey and Scotland, among other places. In my specific case, openly dealing with the diagnosis at that time would have been a hindrance.

Buch von Tokio, Japan
Ausflug an die Grenze zu Nordkorea
Abendveranstaltung mit Kollegen aus China und Taiwan
Stadtführung nach Meeting mit dem Edinburgh Castle im Hintergrund

Dealing with the MS diagnosis in romantic relationships

In my love relationships, I have always been completely open about the diagnosis. I didn’t want anyone to enter into a relationship with me unknowingly, which could possibly be burdened by the disease. Of course, something unexpected can happen in any partnership and suddenly everything is different. But for me it felt better that way and that is the main thing.

Unfortunately, at the time of the diagnosis, I was in a relationship with a partner who was very self-centered. But I know that many are already happily involved at the time of diagnosis and their partner reliably accompanies them through the difficult initial phase and the rest of their life and is not put off by the diagnosis.

Later, I met the love of my life and told him about my diagnosis and the uncertainties associated with it during the getting-to-know-you phase. With my parents-in-law, however, I initially waited and only told them when my daughter, their granddaughter, was six months old. They were shocked at first and after the first questions about my health, they wanted to know if it was hereditary. Totally normal. Of course they are worried about their grandchild and were happy to hear that the probability is only minimally increased compared to the average person.

Allow enough time for questions

I think you need the right moment for such an announcement and you can quickly spoil a relaxed mood with it. Usually the other person has a few questions and you should allow enough time for this. Otherwise, you leave a person with a lot of questions and worries that he or she can only hardly answer themselves.

Therefore, my recommendation is to decide according to your gut feeling. If you need help and support or if it is simply good for you, then it is right to be completely open about the diagnosis. If you need a while to come to terms with yourself and your feelings, then only involve the people who are most likely to give you positive encouragement. You never know beforehand. And if, like me, you prefer to have only a small circle of initiates for a long time, that’s fine too.

It is your life. Every person is unique and deals with life’s difficulties in a personal way. You don’t have to justify yourself for that. Not for accepting help and not for rejecting it.

Why I am now open about my MS diagnosis

For me it has changed now, because I have a daughter and I don’t want to burden her with any secrets. In addition, I would like to encourage newly diagnosed MS sufferers that even 19 years after diagnosis and despite the delayed start of the course-modifying therapy (five years after the MS diagnosis), one can lead a very nice life without restrictions. Mind you, you can. Because if I had a more aggressive form of MS, those five years would have been a very long time.

With my employer, the open approach would have led to fewer professional opportunities. I am absolutely convinced of that. And I didn’t want that. I wanted to travel for the company. I wanted to make an effort. To contribute. Learn from my colleagues in Asia and actively work with them. Because usually there were at least short periods of time to see something of the cities and catch a glimpse of the culture, like here in Kuala Lumpur, Malaysia. 

Sightseeing bei einer Dienstreise nach Kuala Lumpru, Malaysia

In the meantime, my focus is on my daughter, the topic of MS and writing. I’ve said goodbye to a secure permanent position and set up my own business at the beginning of 2022. In August 2022, I started the part-time master’s program „Multiple Sclerosis Management“ and have already successfully completed the first year and learned a lot. In addition to the German podcast, I have now started the English counterpart, which you are listening to right now. And I have a lot of project ideas waiting to be implemented. I am very happy with that.

But maybe it’s different for you. And if you have superiors, their opinion of your illness and its course may influence their decision and your promotion. Some people will treat you with more respect because you are open and brave, others don’t want to put you under too much stress, and the next one doesn’t trust you. 

You have to go your way, make your decisions and adjust them as needed if you feel it is right. I wish you luck with this!

See you soon and try to make the best out of your life,

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Nele Handwerker

Blogger & Patient Advocate

I show you how to make the best of your life with MS from family to career to hobbies. Thanks to science and research, a lot is possible nowadays.

Nele Handwerker


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