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Insights on Sharing Your News

When you’re thinking about sharing your news with others, these insights—gained from real patients with many years of experience—may help you prepare.   This article covers the overall issues, plus special considerations for talking to your spouse/partner, children, employer/colleagues, and strangers

Your attitude will effect your conversations. That doesn’t mean you have to sugar-coat your news or your feelings about it.  It does mean that people will take their cues from you.   This is especially true when telling children, who will be eager for reassurance.  So, do your best to convey your news at a time and in a way that will get the conversation off to a good start.

You are still you.  Many patients are concerned that people will see them as disabled—even before they have any actual or visible disability.  This can be a hard perception to cope with, especially if you are a very active person.  It cuts to the heart of how you see yourself.  But you are still you and people who love you will see that. 

Reaching out to others will help.  Sharing your news can be a relief.  Being able to talk about it will make you feel less alone and overwhelmed. You’ll find that sharing this news can build a sense of trust and intimacy; just as keeping it a secret can undermine them. You’re likely to find friends and family are supportive and eager to help. They just may need some direction from you about how to do that. So, in advance of telling them, think about what you need from them—even if what you need is a little space to think it through.

Start small.  You don’t need to broadcast your news.  If you symptoms are invisible, other people won’t know you have MS and probably don’t need to know.  You might just want to share with a few people who are important to you and who are able to help you thoughtfully sort through the feelings, information, and choices that lay ahead.  If it is important to you, ask them to keep your news to themselves.  You may also want to tell them whom else you have told, what your plans are for telling others, and—importantly—whom you do NOT want to know. (More on secret-keeping later.)  You may also want to consider starting with a professional such as a nurse, psychologist, or other counselor, who can help you come to terms with your diagnosis before you share your news.  Again, the more they know about MS, the more they can help you.

Keeping your diagnosis a secret can be a heavy weight to carry—even for short time.  This is one of those times when you will find out who your friends are.  You might be afraid of how people will react or how their perception of you or feelings for you might change.  These are the risks we have to take when we share this news. If someone behaves badly it is a poor reflection on them and that kind of fair-weather support isn’t going to be worth much in the long-run anyway.  You deserve support right now. 

Be prepared that they won’t always have the reactions and answers you hope for—and that’s OK. With a major event like an MS diagnosis, be prepared that even your friends and family may not be sure what to say or how to help.  People often don’t have the point of reference or experience to give you what you need.  If they don’t know what to say—or say the wrong thing—ask them to do something with you that will help you get your mind off MS for awhile.  That could be a relief for both of you.  Occasionally, someone may overreact.  They may ask “stupid questions.”  They may get angry.  Not everyone deals well with bad news.  If it is possible to avoid those people right now, then do.  If not, information is your best defense.  The more you know about MS, the more effective you will be in those situations.

Keep your perspective.  When you begin to talk to people, be careful about reading too much into any one individual’s experience with MS.  This can be hard to do.  Patients are sometimes taken aback by stories other people tell them about “friends of friends” who have MS.  Most people don’t understand MS and their exposure has often been limited to “worst-case” scenarios.  People simply aren’t aware of the thousands of people with MS who have no apparent disabilities or symptoms.

Be a little careful about the information and suggestions you get back from people.  They may be well-meaning, but misinformed.  So, for example, if your best friend who is a massage therapist gives you advice about your medical treatment or makes recommendations on alternative therapies, you need to go back to your doctor before taking her advice.

Asking others to keep it a secret can be a heavy load for them to carry.  It is not unusual for an MS diagnosis to be a closely held family secret.  It’s important to recognize that your family members may need someone, other than you, to talk to about this too.  Asking them to cover up for you or to lie on your behalf can be tough duty for them, potentially increasing their anxiety.

Be prepared for some pleasant surprises.  For all the warnings we’ve given, it’s also important to say that you may also be surprised by how wonderful some people can be when you tell them.  It might be a welcome hug, a bouquet of flowers, or just an extra helping hand at just the right moment. It can be a profound and humbling experience to accept these kind gestures. People have a way of coming through.

1)  Sharing Your News With Spouses/Partners

Your diagnosis may challenge your close relationships in new ways—which can be an opportunity to grow and make them stronger.  If a close relationship is already shaky or acrimonious, it’s not likely that your diagnosis is going to make things better, but it could be a catalyst for making positive changes in behavior and attitudes.  There are many counselors who work with families privately or in support groups to help them work through their unique issues and reactions to MS.  It will also be important to think through the roles and responsibilities you have now in your close relationships to understand how MS could influence those roles.  For example, if you are a breadwinner or caregiver, you may be concerned about who will take care of you and your family if you can’t meet their needs for a period of time—and they will be concerned as well. Be aware of their potential concerns and be prepared to talk about those issues and find solutions together.

  • Tell them in person—either face-to-face or by phone.
  • Tell them what you need from them.
  • Make time to continue to talk with them to address concerns, needs, and changes in your activities.
  • Give them time to deal with their own emotions and concerns.
  • Don’t be afraid to say you don’t know or can’t answer questions right now.
  • Refer them to TurnFirst.org to learn more about MS     

2) Sharing Your News With Children

At any age, children will want to know what you are going through and why.  They will be concerned and will need some reassurance. Your news will likely scare them and they will have a few basic questions, often starting with “Are you going to die?” Even if you try to hide it, young children will know if something is wrong and it may make them anxious if you don’t explain. It’s helpful to tailor the message and explanation to the age of the children.  Use language and imagery they can relate to.  The National MS Society has some good booklets (such as “Someone You Know Has MS”) to help kids learn about MS and handle the questions that might come at them from their friends and acquaintances.  They will face many of the same issues you will (as discussed above) so educate them and make sure they are prepared.  One thing to keep in mind is that small children tend to volunteer information at school and among friends.  Sharing is a natural way for them to deal with your news.  So don’t be surprised to learn that your child’s teacher or classmates eventually know.

Young Children

Children are intuitive.  They know if something is wrong.  So keeping your MS a secret can scare them just as much if not more than if they know what is going on. 

Tell them during a quiet time when neither of you are distracted or tired. Preferably in the morning when they are fresh and you can take them out to do something fun that feels normal and reassuring to them.

Explain your MS in terms they can understand.  Make your description of what is going on age-appropriate.  Don’t use big words.  (The MS Society has a number of useful pamphlets and resources to help you, click here.)

It may be too abstract for them to grasp.  For very young children especially, they may not be able to really understand enough about what is going on to really deal with it.  They might just say “OK” and move on.  Keep in mind that “sick” is something they associate with fevers and head colds. Children under 5 will not be able to grasp the notion of a chronic disease.

Stay composed.  They will be looking for you to be reassuring and strong.  If you don’t think you can muster it, then consider telling them together with your spouse or partner.

Answer their questions.  Anticipate what they might ask and be ready with answers.

​Expect they will share this news with others.  Children are likely to share this information with their friends and teachers.
     

3) Sharing Your News With Employers and Colleagues

You have rights under the Americans with Disabilities Act, learn what they are.  (See our resources section.)  Nonetheless, one of our first concerns with a diagnosis of MS is how it will affect our ability to earn a living.  This is a big topic and one worthy of more discussion than we can review here.  

A few things to keep in mind are:

(1) news travels fast in companies, so be careful about whom or if you tell.  If you tell a superior or appropriate official of the company they are obligated to protect your privacy.  They are also obligated to ensure you are not in a position where you could harm someone due to a disability. 

(2)  Your colleagues are not obligated to maintain your privacy. 

(3) You are obligated to tell your employer of any issues that would make it unsafe for you to fulfill your responsibilities at work.  If your MS symptoms don’t influence your ability to do your job, then it’s your choice about whether to share the information.  

When it comes to talking about your diagnosis at work, there are a lot of considerations to factor into your decision:

  • Nature of your symptoms.  If you have balance issues, you have to be careful that people don’t think you are a drunk.
     
  • Ability to do your job.  If MS currently impairs the quality of your job performance, you may want to notify your supervisor.  They may be able to work with you to make adaptations to your position that will help you fulfill your duties and responsibilities.  If your performance is not affected, it may be prudent to wait to share your diagnosis.
     
  • Safety and liability.  If your MS impairs your ability to do your job safely, you have an obligation to notify your employer.
     
  • Discrimination. Consult ADA Rights to learn more.
     
  • Missed opportunities for advancement.
     
  • Time requirements for treatment and care.
     
  • Adaptations and training.
     
  • Health insurance.
     
  • Short and long-term disability insurance.
     
  • Privacy. Your supervisor has a legal obligation to keep your health information confidential.  Your best friend at work does not.  If you intend to keep your MS a secret at work, be careful whom you tell.  Also be aware that the community grapevine might reveal your MS at work before you do.
     

4) Sharing Your News With Strangers and Acquaintances

If you are going through an exacerbation and are using an assistive device, such as a cane, people can’t resist asking you about it—especially if you are young.  They will usually assume an injury from sports or try to relate it to their own medical issues, like a hip replacement or knee surgery.  They don’t expect you to say “I have MS.”  First, you don’t have to tell them.  You might have a few pat answers down for those situations, such as:  “Oh, it’s a long story.” (A good one for elevators and brief encounters.)  Some people pass it off as a sports injury, but then they usually have to have a story that corresponds to it.  Of course, you can always say, “I’d rather not talk about it.”

People are nosey.  If you have any sign of a limp or disability, especially if you are young, people will ask you “hey, what happened to you?”  They expect that you are going to tell them you twisted your knee in a ski accident or sprained an ankle.  If you say “I have MS” you will catch them totally off-guard. 

It’s awkward to respond to inquires from strangers.  It can feel like an invasion of your privacy.  So, you need to have a few tricks up your sleeve for responding. 

In these instances, you have a few choices:

  • Deflection.  Try saying “Oh, it’s a long story.”  That usually gives the clue you don’t want to go into it.  Sometime people will press for more information.  You can just smile, nod, and just add, “I don’t want to go into it.”
     
  • Posing a Question.  “Why do you want to know?”  is a good response.  It can buy you some time to think about how you want to answer.
     
  • Lying.  Have fun with it.  Tell them something they really don’t expect, like “I twisted my knee heli-skiing.”  But if you do that, have a back up story.  Or you can just go with the outrageous, like “I’m in the circus.”
     
  • Telling.  You can always be straight up.  Just be prepared that most people won’t know how to respond to the truth.  On the other hand, you might meet some interesting people and hear some interesting stories.

Every time you are asked, you can make your own decision about how you want to answer.  It’s just important to know you have a choice.  Just because someone asks, doesn’t mean you have to tell.

5) Sharing Your News When You’re Dating

Honesty is the best policy. MS could throw a wrench into a relationship, but so can dishonesty.  That doesn’t mean you should feel compelled to tell someone you’ve just met.  Wait until you know if a real relationship might develop and then find an appropriate window to reveal your MS and educate the other person about it.

Tell them in person—either face-to-face or by phone.

Tell them during a quiet time when neither of you are distracted or tired.  Preferably in the morning when they are fresh and you can go out to do something fun that feels normal and reassuring to you both.

See it as a chance to grow. Your news most likely will reveal more about their feelings and character—and that can be a good thing.  If they’re not supportive, then it’s better to find out now.  You need and deserve someone who can handle it and who will be supportive of you.