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A MyMSTeam Member asked a question ๐Ÿ’ญ
Sanford, FL

This may sound crazy but how do you guys get people to understand what MS does to you and all of the meds and treatment? I just feel like the people i care about the most donโ€™t get it because I get up everyday and put on a smile and do all that i need to so when I am having a super bad day they just look at me like I am crazy

April 21, 2021
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Answer Summary

Members responded with warmth and solidarity to the question of how to help loved ones understand the realities of living with MS, with many... Read more

Members responded with warmth and solidarity to the question of how to help loved ones understand the realities of living with MS, with many sharing that the invisible nature of the disease makes it especially hard for others to grasp. Several members offered creative approaches, including using metaphors like a radio losing its signal, having loved ones attend neurology appointments, or simply directing them to Google MS and read real stories. A recurring theme was the emotional weight of guilt and frustration, balanced by reminders to practice self-compassion and lean on the MS community for understanding when others fall short.

A MyMSTeam Member

Well first, sorry no one not having MS seems to understand what it's like though I keep telling myself this is a good thing. Also, there is no good way to explain MS in total. What I've done of late is try to put MS in a way that many others might understand. Using a metaphor if you will. Most of us know what it's like to drive out of radio signal range. The radio starts to transmit periods of static until the station signal is lost. The signal is still being transmitted, it's just that your car is no longer in signal range. It's quite normal for this to happen during a personal favorite song. So the car operator does whatever is possible to maintain hearing the song even through brief periods of static. Well, the station signal is very similar to how your brain "talks" to your body. An MS brain is a whole lot like the station playing a favorite song you loose the transmission from. The song is still playing , your car is just to far away from the station. Our brains are still sending out commands, it's just the signal isn't making it to the right body part but it's a "favorite" song so we try to hear what we can of the song. This proves a struggle for us which is one way to describe a "bad" MS day. Oh yeah, if only distance was the problem, right. We can lose the signal at any time and often without warning. I'd love to tell you this brief story has been overly effective. It does seem to help people understand for a moment though

April 22, 2021
A MyMSTeam Member

I don't try to make people understand about MS, or how I'm feeling, what you can do is give them a book on our life of MS, or tell them to Google it, Personally I don't have time to make anyone understand how I feel, my body goes through enough, Stress isn't one of them,yes we smile,yes we do daily activities, when we can,we get so fatigued and need rest, leave me alone,if I lay down for 2hours,my business, not lazy,don't call me that,or you may not like what's going to come out of my smart mouth,with a Beautiful Smile๐Ÿคฃ๐Ÿ˜‚๐Ÿ™๐Ÿฝ๐Ÿ’›๐Ÿ’ž,my thing is Never let anyone take advantage of you,families or not. It's my journey and if you don't like how my outside looks, deal with it because MS don't have me, I have it,I know I look Awesome ๐Ÿ™‹๐Ÿฝโ€โ™€๏ธ๐Ÿ’ช๐Ÿ‘๐Ÿ’—๐Ÿ’–๐Ÿ’•๐Ÿ’ž๐Ÿ’๐Ÿ’œ๐Ÿ’›๐Ÿ’ฃ๐Ÿ’ฅlet your Mouth be your Whatever you need it to be accept a door knob.Blessings to you Gorgeous Queen Warrior. There is Power in the Warriors.

May 1, 2021
A MyMSTeam Member

I have to remind myself that I have MS through no fault of my own. We didnโ€™t ask for MS. We just have it. Maybe turning guilt for not being able to do what we would like to be able to do into self compassion is the trick. Would we feel compassion for someone else going through what we are going through. Yes, we would. Then why not compassion for ourselves??

April 26, 2021 (edited)
A MyMSTeam Member

Ask them m to read through the comments on this website. Ask them to donate time and/or $ to help cure MS. Take them with you when you see your neurologist. That should scare the living daylights out of them. Ask your Neuro to tell them what MS does to people. Tell them you are 1 of a million people in the US with MS. Hopefully they will see that this could be them.

April 24, 2021
A MyMSTeam Member

MS is invisible to those who don have it. Itโ€™s very visible when we fall flat on our faces in public and many people think weโ€™ve been drinking.

April 24, 2021

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