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 turn, it felt painful. But eventually, I got the courage to start telling family and friends. One conversation at a time. Today, I'm sharing with you the best practices of breaking the news, handling reactions, and creating boundaries moving forward. And my friend, if you want to be more consistent with the healthy habits that get results, download a free copy of my wellness tracker at Alenebrennan. com/ tracker. Now onto today's episode. There are one million people diagnosed with multiple sclerosis in the US. So, that makes you one in a million.

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 so was, I'm not telling anyone. It's none of their business. I don't want to deal with the questions, the skepticism, and even worse, the pity look. I just didn't want to become that person with MS. I always considered myself strong and independent and ambitious. And I believe that's how others viewed me as well. And I didn't want that to 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.

Just a side note, but did you ever notice how many people have an aunt with MS? I don't know. Maybe it's just me, but I found it personally odd. It seemed like everybody I told had an aunt with MS. Anyway, 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 know I definitely dragged it out far longer than it needed to be. I am not a procrastinator, but in this case, I drug my feet. And it was all based in fear. Honestly, it made the in-between time so much more painful than it needed to be. Can you relate? Are you in this right now? Or maybe this conversation is bringing back the memories of when you were first diagnosed.

Trust me, you are not alone. This is something that so many of us living with MS struggle with. That's why we're talking about it today. 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 made it easier. My mom just died. Nobody expected me to act 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 constantly following me around every step I took. I actually started to get resentful. I felt like I didn't do anything to cause this disease. Why do I have to feel ashamed to tell people? I have MS. So what?

I started small, like really small. My three closest girlfriends. I picked the people that I felt safest with. It just made it easier for me to have this first conversation. We already had brunch plans on our calendar, so I decided I would tell him then. I liked the idea of telling them in person. I didn't love the idea that it was in a public restaurant, but I wasn't going to let myself change my mind over such a minor detail. It was on my mind the entire time we met and we were starting to catch up. I thought, 'When do I say it? Do I just get it out there now, do I just like blurt it out, do I wait until after we order? Maybe I say it when we're walking out so we're outside.

Do you play these kind of games too? We torture ourselves. Anyway, this particular group of friends are pretty loud and chatty, if I can say so. So I knew that I just had to get it out there. I couldn't wait for like that opening in the conversation because that just doesn't happen with this group. I didn't want to be interrupted by the server, so once we placed our order, I just jumped right into it. I don't remember exactly what I said, but I'm pretty sure I just said it. I said, 'I have something I want to tell you.' I was diagnosed with MS. Actually, I was diagnosed a year ago. But I've just been trying to wrap my head around it myself. And I wanted to tell you now.

I can't say that I really feel any different now than I did just before my diagnosis. But it definitely has explained a lot of the symptoms that I've had over the past couple of years that were just unexplained and seemed random. Again, I don't remember all the details of the exact conversation, but I do remember each of them had a very different response, which is typical for this group of friends. One kind of acted like it was no big deal. Like, okay. Now what do we want to talk about? And when I got teary-eyed, she seemed kind of surprised that I was getting upset and sharing it. The other one had questions, a lot of questions. She's the intellectual one of the group and off the cuff came up with some really good.

And if I'm being honest, kind of hard questions that I didn't have all the answers to. And then the third, she just wanted to know how I was feeling. You could tell she was coming from her heart 100%. I saw that they were all now processing my diagnosis in their own way. And I just had to give them time to do so. I answered the questions, the ones that I could answer, and I shared how I was feeling. And I really tried to be honest with how I was really feeling. These were my closest girlfriends. 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 because I truly believed that. I shared this with them because not only did I want to answer their questions,

I didn't know what that support would look like. It could mean meeting up for a glass of wine so I could get my worries off my mind. Or it could be me asking them understanding if I wasn't able to show up like my normal self for future plans. And what happened next surprised me. We just got right back to normal conversation. I didn't know how I felt about that. At first, I was kind of offended because I thought, how are we just moving on right after I told you something that was so life-changing for me? But then I realized that's also 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 spend way too much time worrying about what other people will think or say when really most people are consumed by their own lives. And for those people who do have an opinion, I love reminding myself of the saying that what other people think of you is none of your business. Now, that might be a little harsh, especially as I'm talking in the context of my three closest girlfriends. But it's true. I wanted to share this news with them. I didn't want things to change. And that's exactly how things were unfolding. After telling my girlfriends, it made me feel more comfortable and confident in telling others. And for the most part, it did get easier from there.

It actually became one of the times in my life that I now look back on and I think, why did I wait so long to do that? I was in my head for way too long and let fear 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 you tell, when you share it and how much detail you want to go into. There may be some people that it's not appropriate to tell. There are other people that you want to pour your heart out to. You get to decide who you tell, what you tell, and how much you're sharing.

My intention in this conversation is helping to give you that 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 or to someone you don't want to tell. Again, this is your story. You get to tell it on your time in your way. And speaking of timing, that's actually my first tip here. Timing is everything. You need to process the diagnosis before sharing it with others. Take that time for yourself. Don't feel rushed to tell other 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 MS.

And I hope you know that when I say that, I'm not talking about becoming an expert in MS or not having any emotional reaction to it. Heck, the doctors can't even understand it fully. How are we supposed to? And yeah, it's a chronic illness. So we will always have ongoing emotions around the ups and downs and the unpredictability of it. What I'm talking about here is about an understanding of how it affects you right now and how you're feeling emotionally about it right now. 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 actually MS. I also had to recognize that while I was scared and overwhelmed in the moment, I truly believed that everything would be okay. So before you dive into conversations, take some time to see how you're feeling. And when you are ready to start telling 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 really well.

Why did I wait so long to tell people? Why did I try to carry this weight alone? And that brings me to my next tip, setting the scene. When you are ready, pick a time and place where you both feel at ease. You want an environment that's comfortable and free from distractions. So you can both be present in the moment. So as I shared before, for my three closest girlfriends, that was when we were out at brunch. Again, I didn't love that it was in a public place, but it was a rare time when we were all together in person with few other distractions. So for that conversation, it worked. When I told my extended family, that was a completely different situation. I told them via email.

There are far too many of us to tell in person. It's a family of 40 plus. I'm not making 40 phone 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 and I can't believe it, but I actually was able to dig it out so I could read it with you today. This is an email that I sent back in November of 2017. So, it was right before Thanksgiving. And this is exactly what I sent to them. Hi family! Hope everyone is doing well and enjoying the fall weekends. I'm looking forward to seeing some of you for Thanksgiving soon.

Wanted to share some news with you in the meantime. Good news and not so good news. I'll start off with the latter. I was diagnosed with MS. We stumbled upon the diagnosis during a routine MRI and managing migraines. Most people struggle for years to get a proper diagnosis, so this was a huge blessing. And for now, the good news. I started working with a great doctor to help me manage it. And I, of course, found a nutrition plan to help me manage it. I have no visible symptoms. The main thing for me is fatigue and heat sensitivity. No more hot yoga classes for me. It's also inspired me to shift my nutrition coaching practice to helping those with MS and other autoimmune diseases. That's me making lemonade or perhaps a lemon drop shot.

I'm actually really excited about this because it allows me to bring a greater meaning to all of it and help others who are going through it as well. I'm exactly the same as you saw me last time. In fact, I was diagnosed a year ago. So, you've seen me since my diagnosis. I just need some time to get a handle on it and understand it myself. And I've reached a good place with it now. And I believe that all will be well. Certainly, if you have questions, I'm happy to answer. Otherwise, I'm looking forward to seeing everyone on Gobble Gobble Day. Love, Alene. That is literally the message that I sent to my 40-plus family members to let them know that I have MS.

So I basically said, I'm diagnosed with MS, I'm working with a great doctor, and I found a great nutrition plan. The nutrition plan was obviously relevant for me because that is my profession. I let them know I have no visible symptoms. So you're not going to see anything different on me next time you see me. It's mainly the fatigue and heat sensitivity. And then I added in the note about my nutrition coaching practice, just because again, it was relevant for me. And it really did make me feel like I was finding so much more meaning in my diagnosis. Then I emphasized again, I'm exactly the same as you saw me last time. And then I close with, certainly if you have any questions, I'm happy to answer. So let them know if you have questions, please come to me.

That kind of, I felt like setting the tone of this isn't a heavy, again, doom and gloom message. I'm putting this out there. I'm letting you know that this is something that I've been dealing with, but I'm in a good place right now. But it also is a significant change for me. So I want to keep you in the loop. So the tone of this message was really important. I shared the facts. I let them know that I had a great doctor and a good nutrition plan. So that would hopefully help shut down any questions. I didn't get into details of how I was going to manage it. Just saying I'm working with a good doctor was enough to let them know like, great, she's in good hands.

It set the tone of how I wanted to move forward with this. I don't want this to be doom and gloom. I don't want it to be a taboo topic. And that leads me to my next tip here. Be honest about your feelings. Share not just the facts, but share 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 how people respond. I know one of my friends said, 'Alene, I don't know what to say or what to do, but I want you to know that I'm down for whatever you need right now. I will sit on the couch and eat a pint of ice cream with you as we watch girly movies, if that's what you need.'

Now, I'm well aware, she is a gem of a friend. But here's the irony of it. That is a dream response. And my thought was still, 'thanks so much, but I'm fine.' I still was so guarded. My friends, if you're like me, you need to be reminded it's okay to let people into your world and to feel a little vulnerable with them. And of course, this isn't appropriate for every person or every conversation. I also had the friend that I was working with that I told, and he immediately shut it down. He looked at me, he's like, 'Alene, you don't have MS.'

And I remember standing there like feeling so offended because I had an official diagnosis. Like, yes, actually, I do have MS. No, it doesn't mean I'm automatically going to be in a wheelchair, but you dismissing it like this isn't helping. But I also knew that wasn't the person to chase down and try to convince that, yes, I do have MS. And here's what it means for me. And here are all the ways that you're wrong and insulting me right now. I shared it with that person. It didn't go the way I wanted. And then I shifted my focus and kept it moving forward. There are some people that will show up really well for you. And there are others that won't.

As long as 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. But let's circle back to what happens when you don't get the response you expect. Some might be overly sympathetic. Hello, pity look. Others may downplay it, i. e., my coworker, 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 it personally. Again, I go back to one of my favorite quotes: what other people think of you is none of your business. Yes, it's harsh in the context of talking about family and friends, but you can control other people's responses.

And 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 your diagnosis with others. Depending upon who you're telling, you might want to have some basic facts ready about MS to share with them, but 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 with MS.

But it might be really good for someone who has a tendency to overstep boundaries. If people start asking questions 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. But also, you're not obligated to give a detailed medical history. This is your story, your way, your timing. If there are topics or comments that you'd rather avoid, or you prefer not to have a daily check-in about your health, let them know that. 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 whatever, and then immediately go into that next topic.

So you don't have to be rude about it, but just redirect the conversation and keep it moving. And for those that you do want to let in a little bit closer, let them know how they can support you. It can be coming with you to an appointment or just being there for a chat. But after the conversation where you share your diagnosis, it can be really helpful to have somebody check in from time to time. We all want to be supported in different ways. And that's the beauty of sharing your diagnosis in your way. You get to share it however it feels best for you. And you get to set the tone on how it unfolds moving forward. Just be honest. Share it with the people that mean the most to you.

Be honest about how you're feeling and let them know how you want to manage it moving forward. And lastly, my friends, remember this. You get to choose when to share, who you share it with, and how much you want to share. This is your story. You get to do it your way. And you might be surprised that it can feel so much better to get this weight off your back. It's one more step to reclaiming your body, mind, and life from MS. Well, my friend, we've reached the end of this episode. Pick one lesson from today's discussion and put it into action now. It's time to reclaim your body, mind, and life from multiple sclerosis. And for more resources, events, and programs, head over to Alenebrennan. com. See you on the next episode of my MS podcast.