You’re scared to tell people that you have Multiple Sclerosis. How will they react? Will they start to see you differently?
You don’t want things to change.
But you’re also feeling so alone trying to keep it a secret.
Opening up about your diagnosis isn’t easy.
You feel vulnerable and that can be really uncomfortable.
I’ve Been There
As an extremely guarded person, I built a wall… higher and thicker than any wall I had built before.
But then the isolation felt worse than the fear of telling people.
No matter which way I turned, it felt painful.
But eventually I got the courage to start telling family and friends that I have MS… one conversation at a time.
I’m sharing the best strategies for breaking the news, handling reactions, and creating boundaries moving forward.
Emotions of Sharing Your MS Diagnosis
Why do we struggle to tell our family and friends that we have Multiple Sclerosis?
I don’t know, but my first thought at the idea of doing it was…
I’m not telling anyone.
It’s none of their business.
I don’t want to deal with the questions, the skepticism or worse the unmistakable pity look!
I just didn’t want to now be viewed as “that person with MS.”
I’m a strong, independent and ambitious woman, and I believe that’s how others saw me as well.
Would that change now that I have MS?
The reality is I definitely needed time to process my diagnosis before I could share it with others and be ready to brace myself for the reactions, the unsolicited advice and the tragic stories of everyone’s aunt who suffered from Multiple Sclerosis.
Either way, giving myself the time and space to wrap my head around MS was critical to being ready to share the news with others.
Still, I definitely drugged it out far longer than it needed to be.
It was all based in fear and honestly, it made the “in-between” time so much more painful than it needed to be.
My Year of Silence
I was silent for months, almost a year actually.
I hid behind the grief of losing my mom for the first year of my diagnosis
In a way it actually made it really easy.
My mom just died, nobody expected me to be acting normal.
But the truth was I was struggling with MS just as much as losing my mom.
And the silence of not telling the people closest to me, only made me feel worse.
I felt so lonely.
It literally felt like a shadow or a dark cloud was following my every step.
Resentment started to build.
I have MS, so what?
When the pain of isolation outweighed the risk of telling people, I finally got the courage to do it.
Telling My Girlfriends I Have MS
I started small – like my three closest friends.
I picked the people that I felt safest to tell.
This made it easier for me really.
We all had brunch plans already on the calendar, so I decided I would tell them then.
I don’t remember all of the details, but each of them had a different response.
One kind of acted like it was no big deal – and when I got teary-eyed seemed surprised that I was getting upset in sharing it with them.
The other one had questions. She’s the intellectual one of the group and off the cuff can come up with really good but hard questions… questions that I didn’t have all the answers for.
And the third just wanted to know how I was feeling about it?
I saw that they were now processing my diagnosis in their own way and I had to give them the time to do so.
I answered the questions – the ones that I could.
And I shared how I was feeling… like really feeling.
I didn’t sugarcoat anything, but I did want to let them know that I was still me and I was going to be okay.
What Happened Next Surprised Me
We just went back to our normal conversation.
I didn’t know how I felt about that.
At first, I think I was offended because I thought, how can we just move on after I told you something so life changing for me.
But then I realized, that is exactly how I wanted things to be.
I didn’t want things to change.
And this was a clear sign that they didn’t.
I don’t know about you, but I think I spend too much time worrying about what other people will think or say, when really, they’re consumed by their own lives.
After telling my three closest girlfriends, it made me feel more comfortable and confident in telling others.
It Gets Easier
And it did get easier from there.
It actually became one of the times in life that you look back and think, why did I wait so long to do that? I was in my head for way too long and let fear get the best of me.
Now, before we get into my experience and sharing some tips that I want to pass along to you, I want you to know this: This is your story. You have every right to tell it on your terms. You decide who to tell, when to share it, and how much detail you want to go into.
There may be some people that it’s not appropriate to tell.
My intention in this conversation is helping to give you discernment and ways to talk about it when it does feel right.
This is by no means a push for you to tell people before you’re ready and to someone you don’t want to tell.
Again this is your story.
You get to tell it on your timing and in your way.
And speaking of timing, that is my first tip here.
Timing is Everything
You need time to process the diagnosis before sharing it with others.
Take that time for yourself.
Don’t feel rushed to tell people until you decide it’s something that you want to do.
You want to be in a place where you feel strong in your understanding and emotions about it. And I hope you know what I mean here, I’m not talking about becoming an expert in MS. Heck the doctors don’t even fully understand it, how are we supposed to?
I’m talking about understanding how it’s affecting you right now and how you’re feeling emotionally about it.
For me, I didn’t have any visible symptoms.
It was all invisible so it took me a minute to start recognizing the things that I had been experiencing in my body for a couple years now were MS.
I also had to recognize that while I was scared and overwhelmed in the moment, I truly believed that I would be okay.
And before diving into conversations, take some time to see how you’re feeling.
And when you are ready to start sharing it with others, take time to think about what you want to share and how you want to say it. You can even write it out in a journal or visualize the discussion going well.
But remember that this is your story to share… and you do it on your time.
I am willing to bet though that you’ll find saying the same thing that I did – why did I wait so long to tell people? Why did I try to carry this weight alone?
That brings me to my next tip.
Setting the Scene
When you are ready, pick a time and place where both you and the person you’re speaking to will feel at ease. You want an environment that’s comfortable and free from distractions, where you can both be present in the moment.
Again, I told three of my closest girlfriends when we were out for brunch.
I didn’t love that it was in a public restaurant, but it was a rare time when we were all together in person with little other distractions. And for that conversation, it worked.
When I told my extended family… that was a different story.
I told them via email. There are more than 40 of us. I’m not making 40 calls to tell people I have MS.
I also didn’t want a phone chain going around in a way that I could no longer control the message.
I wanted everyone to hear the same message and hear it directly from me.
So I literally wrote an email that was heartfelt and to the point. It was just before I shared my diagnosis publicly.
Be Honest About Your Feelings
Share not just the facts, but also how you’re feeling.
Whether you’re scared, optimistic, or a mix of emotions, being genuine will help others understand your perspective.
And of course how much you share will depend on who you’re telling, but I really had to encourage myself to be honest about my feelings.
You might be surprised at how people respond.
I know one of my friends said, Alene , I don’t know what to say or do, but I want you to know that I’m down for whatever. I sit on the couch with a pint of ice cream and watch girlie movies with you, I’ll go out for drinks with you, or I’ll talk with you on the phone every night if you need me to.
Now, she’s a gem, but here’s the irony of it.
That was a dream response, and my thought was still, thanks so much, but I’m fine.
My friends, if you like me, need to be reminded, it’s okay to let people into your world and be a little vulnerable with them.
Practice Active Listening
Now, the next step here is important but we can easily overlook it.
After you share your diagnosis with someone, give them a chance to respond.
Give them a minute to process what you shared.
Give them the opportunity to ask questions – to whatever extent you’re comfortable with. But we can’t just drop this in their lap and then run.
Most people will focus on you and how you’re feeling – both physically and emotionally.
Be Prepared for Reactions
But of course, not everyone will respond the way you expect.
Some might be overly sympathetic (hello pity look), some may downplay it, and others might not know how to react at all.
But remember, their initial reaction is often out of lack of understanding.
Try your best not to take their response personally.
People always respond with how they see the world – and their view is skewed by their own emotions and experiences in life that have nothing to do with you.
This is why you got grounded in your own beliefs before sharing this.
Equip Them with Information
Now depending on who you’re talking to, you might want to have some basic MS facts at hand.
It can also be helpful to give them a resource to get more information.
Maybe this podcast is one of those resources to help them better understand your world.
Reassure and Set Boundaries
And then let them know how they can support you moving forward. You can let them know that you don’t want it to be a taboo topic but you also don’t want to make a big deal out of it either, so you’ll bring it up if/when you want to talk about it. That’s a little standoffish and good for someone who might have a tendency to overstep the boundaries.
If people start asking questions that you don’t feel ready to answer for whatever reason, it’s okay to say, “I don’t have all the answers right now, but I’ll share more as I learn and experience.”
You’re not obligated to give a detailed medical history.
If there are topics or comments that you’d rather avoid, or if you prefer not to have daily check-ins about your health, let them know.
You can say, “that’s really thoughtful of you to ask, I don’t really want to focus on that right now, let’s talk about… “X” and then immediately go into that next topic.
Communication is key.
Create a Support Team
Last but not least, if you’re comfortable, discuss ways they can support you, whether it’s accompanying you to appointments or just being there for a chat.
After the initial conversation, it can be beneficial to check back in after some time has passed. This allows them time to process the information, ask follow-up questions, or share further feelings too.
And lastly, remember this:
You get to choose when to share, who to share it with and how much you want to share. This is your story. You get to do it your way. It’s one more step to reclaiming your body, mind and life from MS.
How did you tell your family and friends? Do you have tips or maybe even an entertaining story that you can share with us?