The Benefits of Being Open about MS: Why It's Worth It

Рет қаралды 727

10 ай бұрын

I have come to discover on repeated occasions how beneficial being open about your MS to other people can help you live a better life with Multiple Sclerosis. It’s so worth it you won’t want to undo it. Here’s how it has helped me!
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What is Multiple Sclerosis ❓
Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system). In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves. Signs and symptoms of MS vary widely and depend on the amount of nerve damage and which nerves are affected. Some people with severe MS may lose the ability to walk independently or at all, while others may experience long periods of remission without any new symptoms. There's no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease, and manage symptoms.
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⚠️ DISCLAIMER:
My channel is in no way supposed to provide medical advice or guidance and I do not claim any medical knowledge of Multiple Sclerosis. I merely discuss MS-related topics from a patient's point of view. If you have a serious medical condition, please consult your medical practitioner immediately. By using this channel you do so at your own risk. "Life of Seb" KZfaq channel accepts no liability in part or in full for any damages or injury caused by the use of any content provided.
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Пікірлер: 33

@lilianadoval8927 10 ай бұрын

Seb, when you share these tips you do it with such humility and wisdom that they fullfill their objective. They reach the center of our reasoning and our emotions. Unfortunately, there is an almost genetic tendency to hide our weaknesses or to live them with certain shame but having the courage to expose them is what makes us stronger, even it seems like a contradition. It is always a pleasure to watch your videos. You are already one of my essentials. Peace.

@LifeofSebMS 10 ай бұрын

Thank you so much for your kind words Liliana 🙏🏻🧡

@MysticalDreamFire 10 ай бұрын

Ty for talking about this. It is an important difficult to talk about. People often think you don't want to be a part of something if you mentioned your issues. People can be surprising helpful when we share.

@LifeofSebMS 10 ай бұрын

Exactly 🙏🏻🧡

@lauracarlson9260 10 ай бұрын

Even after 18 years I have only disclosed my MS diagnosis on a need to know basis. This, of course, includes family as there is a small genetic link in MS that they should be aware of. If they are a blood relative they have a greater risk of having MS as well. I have also disclosed to a small set of close friends- probably 10- as concealing from them would be just too difficult and I can count on them for support. I recently disclosed to a close friend that I was going to be traveling abroad with for 11 days. I felt she had to know before we went and even before she committed to the trip with me as I would, undoubtedly, need some help here and there. She said it would be no issue and we have been friends basically the entire time I have been diagnosed. She was in charge of determining what cities we stopped in and lining up the accommodations while I sorted out what we wanted to do at each stop. I know she is lactose intolerant and another on our trip was gluten intolerant so as I planned the itinerary I keep those restrictions in mind. As it turns out she did not think to make having a lift/elevator in the hotels was necessary so none of our hotels had them. They were often historic and the ADA requirements we are accustomed to in the US don't apply. As a result my carry-on and often my travel bag had to be lugged up the flights of stairs by someone else- I can, thankfully, with time and effort get up the stairs myself so they didn't need to carry me ;-0 This was fine in the beginning of the trip but by the end they were tired of accommodating me. Through the trip the frozen shoulder she had recently developed worsened and the knee and ankle weakness of the one husband on the trip worsened. Likewise their food in-tolerances were more of an issue as they wanted to walk up and down the street finding a menu that would work for them. The other mother, apparently, is afraid of bridges so had to be warned when crossing and keep her eyes closed. My friend can't ride in a bus or a train unless they are in the front row or they get motion sickness. Basically we all have our unique issues that we all had to accommodate as we traveled through the country and navigated our 12 days together but in the end all my friend said was that supporting me with MS (and I am at about an EDSS of 6, needing a stick) was more effort than they thought it would be. In my thinking I was less limited in travel than all their requirements but kept my mouth shut. So- that's what it takes sometimes to really know your friends. A service person, like the people that helped me at the airports or in the trains- where it is their job to help- were great. I wore a Sunflower Lanyard which helped a lot. Actually because I wore it and my traveling companions got routed around many lines and inconveniences but that likely doesn't offset having to help with luggage up stairs at hotels they booked...I will be careful with who I travel with I guess...or make the hotel reservations directly. I also don't disclose at work except for HR for the accommodations I need. The environment is too competitive and I know there are opportunities that I wouldn't have been offered if they knew as often people mis-perceptions of MS would be that I couldn't handle the work, the stress or could be inconsistent.

@LifeofSebMS 10 ай бұрын

Certainly a wise choice 🙏🏻🧡

@mikeshanermusic 10 ай бұрын

I have anxiety about talking to people because I have problems finding words and I get confused easily. It really helps me when I feel brave enough to sometimes let people know I have MS. This invisible disability can make us appear strange, and I'm so tired of feeling weird in social situations. People can be very kind when given the chance. Keep making these great videos Seb!!👍👍

@LifeofSebMS 10 ай бұрын

Thank you for sharing Mike! 🤗🧡

@SandraMendezLuque-vx9yr 10 ай бұрын

❤same here

@kenneho 10 ай бұрын

I'm just the same way. Haven't though of this as part of my MS. Is this really a symptom of MS? Edit: I just googled it and it is indeed. Thanks for tiur comment - I just learned something new about my MS

@silentneo1431 10 ай бұрын

I am very grateful for your messages my friend. Before I got diagnosed I thought I was going through hell and when I finally got out of it BAM! MS comes in. You have given me hope with your positivity. 🍻

@LifeofSebMS 10 ай бұрын

MS will hopefully make you able to filter through less important problems 🙏🏻🧡

@ulftruffe8723 10 ай бұрын

True. I lied and hid my disability in the beginning. It took a lot of energy. Think it caused several relapses unnecessarily. Now I am open with my MS and I manage my energy at my pace. But of course the brain thinks I can still dance dirty dancing, ha . Yes Yes. Maybe I can too but in a really dirty way. Hurry slowly hug Ulf.

@LifeofSebMS 10 ай бұрын

Great advice Ulf. Du er så inspirerende 🤗🧡

@MamaV6531 10 ай бұрын

You're just so cool and inspiring! Thank you for this - more lovely encouragement❤. I have had MS for over 20 years and have only told a few family members. They never offer help, they are impatient with me, make me feel guilty and they don't even mention it, making not just the disease but ME feel invisible. It is quite a burden so I hope others will follow your advice. I haven't told my four children because I don't want them to be frightened and there is a bit of me that thinks if I admit it, it will take me over. I am not very brave! I am glad you have had good experiences revealing your condition❤. Thank you for letting me share this with you all! Take care everyone❤

@LifeofSebMS 10 ай бұрын

Thank you for sharing with us your very real struggle! Your sharing this is already brave 💪🏻🧡

@NYNC88 10 ай бұрын

Seb, I'm really glad you've had a good experience when you told people. It hasn't always been the same for me. I told a few people years ago, and received a few very hurtful and offensive comments. My advice to everyone is to be careful who you trust with this information.

@LifeofSebMS 10 ай бұрын

😓🧡

@zoranagavrilovic9403 10 ай бұрын

I hear you Seb. But there's another side of this story. Telling some of my colleagues that I have MS made them "overly protective" of me and they didn't give me enough responsibilities and I stagnated while working with them. I don't blame them at all, just wanted to let you know this can happen too

@LifeofSebMS 10 ай бұрын

Yes, that is being overly helpful, which ultimately comes from a good intention 🙏🏻🧡

@smurfbythebay 10 ай бұрын

Sidenote I love the timing of your videos. Not too short, but not long at all, straight to the point. I always watch them in full and never skip or fast forward anything.

@LifeofSebMS 10 ай бұрын

🤗🧡