Multiple sclerosis can be a lonely disease.

I don’t think the world will ever understand that we don’t need their unfounded, unproven, misinformed opinions or their self-help miracle cures, mineral water and diet plans. We simply want to know that they care. Yes, it really is that simple. A kind word, a smile, a helping hand…you’d be amazed at just how much they actually help get us through the difficult times.

We want to stop being looked at as if we are a green martian when we park in a disabled parking spot at the store because we look too young and healthy to need it. We want people to be considerate when we struggle opening a door they so conveniently rushed through only seconds before. We want a chance to rest in the afternoon without being thought of as lazy. We want to be invited out with everyone else for lunch or an evening of fun even if we have to turn down the invitation later.

Multiple sclerosis can be a lonely disease. It can isolate you especially when your mobility decreases giving you fewer options for socializing and interacting with the world around you. The internet helps to bring people into your world but online avatars, screen names and hashtags can only do so much.

When you find yourself having a down day filled with loneliness, tears and a loss of hope that anything will ever get better, don’t lose heart. You are truly not alone. My struggle may be different than yours, but I understand the depths of despair that happens because of a disease that has taken over and altered my world in ways I never thought possible.

All those hurtful comments people make and those misunderstood words of advice from well meaning friends, if they are not helpful, toss them to the side. Don’t hold on to anything that pulls you down whether that be a thought, words or even a person.

Let go of all the junk you have been holding on to—those things that weigh you down and that people have spoken about you or to you that do no good. They’re not worth carrying around. The only thing you need to be carrying is your head…carried high.

MS Gets on My NervesMS WarriorMS Superhero

 





5 replies
  1. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope we do have to let go of useless things we no longer use. I have got rid of some of those things but still not finished, it can be hard to do but need to be done.

    Reply
  2. Stéphanie Lépine
    Stéphanie Lépine says:

    Thank you for this post. It is hard for others to understand and it is even harder for us to find the balance between fighting the good fight and letting go of mean comments. What we have to remember is that we truly are not alone and to use the ressources around us. You are amazing and a true source of inspiration!

    Reply
  3. Tammy
    Tammy says:

    It’s also hard when you belong to a group that you donate to or pay membership fees to be a part of. And you interact with the things they do online because that’s the world you have because of mobility but they do videos and discussions and leave you out. It’s sad being left out when you put in. maybe even more than some that show up but don’t give. I don’t do it for recontion so I have to remember that. But if I do a video on people in my group that are dog owners for example I don’t leave out one person I include them all. Or don’t do a video.

    Reply

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