Sitting on the beach

You didn’t do anything wrong

It’s hard to explain to people why you aren’t a quadriplegic or a paraplegic even though you have lost much of the feeling in your feet, legs, hands or arms. It seems in their minds that if you have no feeling in them, then you shouldn’t be able to use them. It can be hard living with a chronic illness that people can’t see.

I love people’s curiosity about MS, especially the young people. Those who ask questions and really want to understand what MS is all about. I admire their questions and welcome them because it gives me a chance to educate people about how my insides really feel and the struggle I face every day.

The people that I have the hardest time with are those who choose to not understand and not care. They could be family members, neighbors, co-workers, bosses, friends, or strangers. Their lack of care and their choice to not understand speaks volumes about who they are as a person. It’s a heart issue on their part…it has nothing to do with you.

When someone attacks your inability to do something or your pain and struggle with statements like “suck it up, it can’t be that bad”…it’s those people who need a moment living with MS to understand that it really can. If I could give away my MS for just a minute in time, I would give it to those people so they could get a reality check.

What I have learned over the years is that you will always meet people with a lack of compassion or understanding. Don’t let their ignorance get you down. It is showing their weakness, not yours. Do your best to walk away (or wheel away if in a chair) and shrug off their insensitivity. Yes, it can break your heart. I know the feeling of not being understood, but you can’t let their insensitivity get in your head and make you think you are “less than” or unimportant and useless.

You didn’t cause your body to turn on itself and begin attacking your Central Nervous System. You didn’t eat or drink the wrong things, live a bad life or not take the right kinds of supplements. MS just is.

I know I say it often, but keep your head up. You are going to make it through today. Don’t listen to other people’s negative opinions…or yours for that matter. You are amazing and a treasure. Put a smile on your face today and fight on.

MS Gets on My NervesMS WarriorMS Superhero  

About the Author

Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

24 replies
  1. Kelly
    Kelly says:

    I try and write each day. I have writting something similar than what you have written. I said if only I could give one person ms for a day. They would fall on the first step. ms is not for wimps that’s for sure.

  2. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    You are right. There is a lot of ignorance out there. I think it’s great that you are able to reeducate young people about what MS is about. Too many people don’t really know/care about how we live with this ‘unseen’ problem. Unfortunately to ‘show’ the problems we have can be hard on us as well.

  3. Nicole Kiesznowski
    Nicole Kiesznowski says:

    Thank you so much. There are alot people who don’t care to even try to understand. There are people in my life who will say they understand yet push push till I’m broken more and in tears. They then turn around and say everything my fault. I can tell someone in having a rough day and they do their best to make it more rough for me. I have been told by alot of doctors and therapist plus other people, that I need to just be alone and to not talk to my family because these people hurt my health. I understand what they mean but I feel like then I’m being punished. There’s way more going on here then just my multiple sclerosis of course and I know most people can’t deal or get their mind around it in real life. I don’t blame no one for any of this. There alot things to be said but I won’t or can’t for fear losing what little I have left. I still keep pushing and going and being positive as much as possible for myself and always being positive for others.

    • Sharon
      Sharon says:

      Please please don’t let these people be part of your life. People burn their family cards by not standing by you. You are young but believe me as the years go by you realize that anyone who doesn’t bring something positive to your life is not worth letting be part of your life. It is very sad but you need to only surround yourself with good people and sometimes it might just be one good friend.

    • Ms.Body
      Ms.Body says:

      BaBy let me encourage you to do YOUR best and let ☝🏾HIM☝🏾handle the REST. If you didn’t know stress is NOT conducive to our health. Hence I avoid it at ALL cost. I REFUSE to jeopardize my health or my life worrying about the irrelevant. I really am a sweet person;however I will ❌NOT ❌ kill me or take the risk of being hospitalized over unnecessary shenanigans or any other additional Tom Foolartry. #wordtotheWISE…missMEwiththeBULL. I am ❌NOT ❌ finna kill me worry about the irrelevant. I WILL help anybody do anything but at the same time they MUST help me to help them!!! #NOPE NOPE and even the more NOPE😬I’m ❌NOT❌ doing it for you. Now I will try to you in any way I can to the very BEST of my ability but ultimately it’s up to you once the ball is in your court😉#WORKthatball❌DON’T❌ let that ball work you!!! Hangintherelovewith☝🏾HIM ☝🏾you GOT this😉 you

  4. Lori
    Lori says:

    I agree, I think those who are so quick to judge need to live with MS. Myself, I guess I have fallen back into the anger of first finding out and there are some I wish could experience it for about 3 years. Negative, yes. What people don’t realize is I am struggling just as much with my inabilities as they are sick of being asked how I need to do something. It takes everything I’ve got to keep going to work, and people just think I’m being lazy. Really tired of explaining it.. Hope everyone else’s day goes well though. Prayers for all with t his disease.

  5. Vivian Morris
    Vivian Morris says:

    The trouble is, people don’t know how to react to someone who is suffering, knowing that they are powerless to help. They often come across as uncaring when in fact they just don’t know what to say. To my friend who is sooooo brave, luv ya , ya tart.xxxxxxx

  6. Sharon
    Sharon says:

    Fortunately never have had to deal with this. The gift of MS was I quickly found out who were my true friends and jettisoned the vampires who loved to call and unload on me with their problems! 27 years later with a braced leg and using a walker always for balance and scooter for any distances, I have found that having moved to Oregon from California 15 years ago there is a world of difference. Can hardly remember the time in a store someone has not offered to get something off a high shelf for me — either an older or young person. It is aslo a rare moment that when I am getting my scooter in the car with an automatic lift that the same thing doesn’t happen. Astounds me thst even teenagers will stop and ask if I need help. People’s kindness is a blessing.

  7. Leslie
    Leslie says:

    Penelope, it’s amazing how you are always ON POINT with the struggles I encounter living with MS. This is still new to me~ my current flare-up, or what started my current disabilities, began 11 months ago. …Conclusively, all from damage caused by MS over the past 10-15+ years, while not knowing I had it. Now, I deal with family members saying “there’s nothing wrong” with me and I’m “faking it.” I wish they could experience what I do every day, so maybe –just maybe– they would actually understand my struggles and possibly even show some understanding and support.

    Thank you *so very much* for taking time out of your schedule to help so many of us feel like we’re not alone in this fight.

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