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Hello. Hello. Thank you so much for tuning back in. And first and foremost, happy Mother's Day to all the moms out there listening, your support partners, the people who love you. This one is for the moms and honestly, it's really for anyone with Ms. Who is having a hard time sharing your experience with Ms. With your loved ones. I've recently been having a lot of my Missing Link members as well as social media audience tell me that they are struggling with this and sometimes it's because they just don't have the words to explain what their experience is like or because they know that the person they're trying to explain it to won't understand because they don't have Ms. And sometimes for other reasons. So I recently asked my community one question which was what do you wish your family or loved ones knew about your ms? Your experience with Ms. And the response was so overwhelming and so heartfelt, I didn't count the exact number of responses, but I want to say probably 75 different messages. And today I want to share with you what they said and in their own words. And if you were someone who submitted something, what you said in your own words. Because sometimes it's hard to find the words yourself. And hearing how other people might explain their experience can help you with explaining or even just understanding yourself. The big question is, how does someone

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with Ms. Actually improve, improve their mobility, strength, energy independence, the list goes on. My name is Dr. Gretchen Holley, physical therapist and multiple sclerosis specialist. Welcome to the Missing Link podcast. Tune in as I share the top strategies and exercises to help you gain control over your life with ms, using research driven insights and advice from top industry experts. Whether you're newly diagnosed or have had Ms. For over 30 years, whether you have relapsing Ms. Or progressive MS, this podcast is for you. You're sure to feel empowered and inspired after each episode.

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Ready?

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Let's dive in.

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So if you've ever tried to explain what Ms. Feels like and you just couldn't quite get there, or maybe you're a family member, listen, you know someone you love, someone with ms, and you're trying to understand either way, this episode is for you. And if this resonates with you, I would highly encourage you to send it to someone you love. That that's the gift of this episode. The more people that can understand what people with Ms. Are going through and what their experience might be like, the better. The Ms. Experience is so, so different for every single person and every single hour can be different, honestly. But I'm hoping that this episode can shed some light on what it might feel like to be the one living with Ms. Because if you don't have ms, it's impossible to understand unless you're able to hear it in a way that makes sense to you. So let's just dive right in here. So the number one thing that my community said when I asked them what their experience was like and what they wish their loved ones knew was around fatigue and most importantly, that fatigue is not the same as being tired. This came up more than anything else and in so many different ways. I want to read some of the responses directly as they were given to me so that you can understand what it might feel like. For some people with ms, fatigued isn't the same as tired. Fatigue is not just tired. My fatigue is vastly different from their fatigue. How strong the fatigue is. Fatigue is overwhelming, so symptoms change day to day and minute to minute. I wish they knew that fatigue for us is more than just being tired after a bad night of sleep, how exhausted I am daily, how tired I am. And I'm not surprised that these are the types of comments that came up most, because I do feel that this is one of the most misunderstood symptoms of ms, and it is a common one. There is research showing that about 90, if not more than 90% of people with Ms. Experience some level of fatigue. And most of the time that you say that you're fatigued, people without Ms. Assume that it's the same fatigue they feel and it really isn't. Ms. Fatigue comes from the nervous system itself. It is not fixed by sleep, and it can hit without warning in the middle of doing nothing. It can be so fatiguing that your eyelids feel so heavy that you can't even open them. And it can affect your thinking, your movement and your speech, not just your energy levels. I have other podcast episodes going into the Ms. Fatigue Full experience, but for now I just wanted to validate that for everyone who's sharing that your fatigue as someone with Ms. Feels different and is different than someone who doesn't have Ms. That is absolutely true. It is a different cause and therefore it's different levels of severity and different fixes and sometimes no fix. Another huge theme was invisibility, that the symptoms that don't show up on the outside are still affecting them. And so here are some other responses that came from my community when I asked, what do you wish your loved ones knew about your experience with ms? All about my invisible symptoms. The invisible side to a lot of it is so Hard to explain. At times I wish they knew how serious the disease truly is. And all the invisible symptoms, we struggle with that. It's often invisible. You can't see or imagine what I'm feeling, how it physically feels to live with Ms. Another component that goes right in hand with the invisible symptoms of Ms. Was the masking component. So several people specifically mentioned hiding their symptoms. Some such as, I don't share 90% of my symptoms or pain because I want to pretend everything is fine. How much I hide or manage the symptoms, how much I mask MS, is constant. Just because I'm not having an attack doesn't mean it's gone. I think these two components, the invisible symptoms and the masking, is so common. It is such a universal experience with Ms. And it's really tricky because the invisible symptoms, the reason it's called that, is because you can't see them. It can be symptoms like fatigue, pain, sensation, so many changes in our body that no one can see. It's just something that you feel, depression even, and then the masking on top of it. So first and foremost, people assuming, oh, you look great, you must be feeling great, and then also masking because you, you might want to pretend that everything is fine, or you might not want to cause a scene or make anyone else feel a certain way. And just because you're appearing fine physically or mentally, does not mean that you are fine and that you're not experiencing symptoms. The next category that was represented in the answers was the unpredictability. As I mentioned earlier, every day with Ms. Is different. And to be honest, every hour, if not every minute, some days it can be different. Your symptoms can vary hour by hour, minute by minute. And this theme was everywhere in the responses. So I wanted to read a few to you. No two days are the same. It can be different on different days, every day and every hour is different when it comes to movement, that every day is unknown and unpredictable. Symptoms can change quickly. It's unpredictable and sometimes I have to cancel plans. I can't plan long term for events. My days are never the same. It is always toughest in the morning to get up and get going that it doesn't go away once you start medication. And every day is completely different. I'm trying my best every day. Some days my best is just like 30%. These were so validating to read because this is why things like but you were fine yesterday can feel so frustrating to people with Ms. Ms. Is unpredictable by nature and it's not inconsistency, it's the disease. It's not the person living with Ms. That that is just having a different day. It's the actual disease that is causing each day to be different and each symptom to be different on each day. So oftentimes phrases like but you were fine yesterday or but you look great, while it might feel like a compliment, it often feels defeating and discouraging and frustrating because that's not what's actually happening. The symptoms might just be invisible or they're masking. And it can be really hard to deal with this level of unpredictability. And I also just want to acknowledge that there's grief in that there's grief for the person with Ms. And for their family, that every day is different and that you might need to cancel plans last minute more often than you would like and that some days your absolute best is just 30%. The next common theme that came up was all about the emotional and mental toll that it takes on bodies with Ms. That it's not just physical. With ms, we do tend to see the physical components. So if Ms. Is not just physical, it does tend to be the part that people see. So if you have a change in your walking, maybe you're walking is slower or maybe you have a limp or you're swinging your leg around. Those are symptoms that people can see and therefore potentially understand a bit better because it's visible. But the emotional and mental toll is not. So here are some of the most powerful comments that came in with this theme. How much it affects the emotions it's not all or only physical symptoms. That it's very mental and depression is serious depression and emotional. I wish they knew how scared I feel and that every day is a climb. I'm trying my best. I wish they knew I had Ms. In my daily struggles, it's kind of lonely sometimes. The guilt I feel for not contributing as much as I used to, the loss of confidence. How hard it is to choose me on low days and not the time with them. I'm not faking it for attention. The emotional weight that goes unspoken with all of these Ms. Symptoms and just the Ms. Experience as a whole is so very real. And emotional symptoms in Ms. Are neurological. This is another big misunderstanding. It's not just stress and it's not just anxiety or depression because you have this disease. It's depression and anxiety and emotional ability that can all be part of the actual disease process. The actual changes that are happening in your brain are causing depression, anxiety, emotional lability, something called the pseudobulbar Effect, which is where your emotions happen in different wrong situations. You might be extremely happy and you feel very angry, or you burst into tears, or you might be in a very serious situation and you're just bursting out laughing. All of that is an actual symptom of the disease itself. And feeling misunderstood adds another layer of complexity, and that's exhausting on top of everything else. And what I hear from a lot of my Missing Link members and a lot of my social media followers is that not only do the invisible symptoms and this emotional toll really weigh on them, but it does make them feel guilty and a loss and they don't want to feel this way. I think sometimes people who don't have Ms. Can feel like they are choosing to feel depressed. They're choosing to be anxious about X, Y or Z. And that's not the case. It's not as easy as choosing not to feel depressed again. It's actual changes in the brain. The last theme that came through was the effort behind everyday things and what it cost to do simple things day to day that a lot of people take for granted and don't even realize. It's how much energy goes into those tasks and the activities that look effortless from the outside, but they definitely don't feel effortless. So again, when I asked my audience, what do you wish your loved ones knew about your experience with ms? These were the responses that followed this theme. How things require more effort and energy. How absolutely hard it is to just do anything anymore. Every step is a possible fall. How hard it is to keep going. Just showering and washing and drying my hair has become a challenge. How very hard it is to do the things that were once so easy. The sacrifices we make and the constant compromise we do. It is a moment by moment experience. Planning helps, but sometimes my body says no. And with ms, going back to our first theme of fatigue, so much that you do when you have Ms. Can increase your fatigue. And these simple things or things that used to be simple and how much effort it now requires can really take a toll on the fatigue that body experiences. And not just that day. You might do something. And while it might look simple from the outside, your body is working. It's so freaking hard to do that thing. Even if it's just showering or going to get the mail from the mailbox, taking out the trash, whatever it is that you might, your body might physically be fatigued for a few days after. And it's not laziness. It's not excuses. It's what's happening with the disease. So much of the Ms. Experience is misunderstood because it appears like something that we can choose, but it's unfortunately not that simple. It is actual changes causing these symptoms, even symptoms that you might think that you understand if you don't have Ms. Again, fatigue is just such a great example, but it feels completely, completely different. So I hope that hearing these allows you to feel like you might have the right words to share with your loved ones. If you have ms, or if you are someone who loves someone with Ms. Or knows someone with ms, hopefully this gives you some perspective of what they might be feeling or experiencing and not knowing how to share with you. It is hard to say these things out loud as one of the numbers shared above. Sometimes it's hard to share because we would like to pretend that it's not true or it's just too hard to explain it, knowing that someone with Ms. Doesn't feel it so they won't understand. And that's why so many people don't share and mask. And that's not wrong at all. It can be a coping mechanism. It can just be easier and less energetically draining than attempting to say these things out loud. The last one that I want to share with you I think is such a perfect one to close with and it was this. I will never let you know how hard it is because you are my why. And that makes me emotional because as a physical therapist, something that I help people with of course is exercises to improve walking and mobility and really just improve your ease of your daily situations. Getting out of bed, getting dressed, showering, all the things that we normally have to do in a day to day situation, day to day life. But with Ms. It is hard to do those things. It is hard to exercise consistently and especially when you're exercising in the right way. It is exercises that are hard, they're supposed to be really challenging and they might increase your fatigue. They might temporarily cause a symptom flare if your core temperature rises. Again, that's another one of the invisible symptoms. And it's hard and it can take a long time to see progress. In the regular physical therapy world, when you're working with orthopedic patients, it's common to see improvements in your strength and mobility and function in four weeks, six weeks, eight weeks. But when you have ms, you can see improvements that quickly, but those improvements are often so, so small that no one else even can see it. It's just something that you're feeling and it often takes 12 weeks, several months, maybe even a Year, in some cases, maybe two years of staying consistent before your mobility is consistently improved or whatever it is that you're working towards. It can take a really long time. And so one thing that I help people do is determine their why. And what that looks like is oftentimes when I very first ask someone, why is it important for you to join the missing link? Or why is it important for you to exercise with your ms? The first answer is often, because I want to get stronger. And that's a great answer. However, the process is, I keep asking you, why? Okay, well, why do you want to get stronger? And then whatever your answer is to that, I ask you again, well, why, why, why? And eventually we get to this really deep meaning. And, and this, this quote, what, why it makes me emotional is because it perfectly demonstrates what 99% of people get to, which is it's for you, it's for our loved ones. Nine times out of ten, the, the reason that someone wants to exercise, even though it's hard, even though they've not stayed consistent before, it's because they want to go grocery shopping with their spouse, they want to go for a walk with their family outside, they want to participate in life with you, they want to go trick or treating with their children. These. These things are the real reason why it's important to them. Not just for exercise, but for anything that they're doing staying consistent with nutrition. Maybe they're following a nutrition plan. Maybe. Maybe they're working on staying hydrated. Maybe they're doing vibration therapy or massage or acupuncture. Whatever your loved one with Ms. Is doing at the end of the day, it really does often boil down to the hope and possibility that doing these things will allow them to show up better for themselves, but also you. And oftentimes that people with Ms. Mask their symptoms or just don't share, it's because you are their why. And they don't want you to know. They don't want to burden you with that. So if you are someone with Ms. And you've been carrying these things alone, please know that you don't have to. This episode exists so that you don't have to find the right words. You can just share this with the people that you love or the people that you want to understand in the best way that they're able to withhold what you might be experiencing. And if you don't have ms, if you are the family member or the loved one, the support partner, listening to this episode, then I just want you to know that you don't have to fix it, you don't even have to understand it. Just showing up, believing what they say, asking how to help. That is everything. And I just want to thank my community so, so much for your responses. You truly shaped this episode and these were your words, not mine. And I think there's so much power for others living with the same or similar disease to hear your words. So thank you so much for being vulnerable and sharing them with me. I hope that your Mother's Day is or was amazing, depending on when you're celebrating. And I hope this episode allows you to feel seen and heard and also appreciated.