To whom it may concern: Advice to the world about life with Multiple Sclerosis

To whom it may concern:

There is an entire world filled with people who don’t understand Multiple Sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will give you insight into what life is like for me…giving you insight and understanding into the life of someone living with MS.

First off, I would like to say that Multiple Sclerosis is real, it hurts, it is full of challenges and struggles, and if you haven’t figured it out yet, it is invisible to a majority of the population since the destruction takes place inside the body. The effects are seen in other ways as I walk, talk and go through my day with disabling symptoms, but if you were able to see inside my body, you wouldn’t judge me so quickly. My insides are a wreck and filled with chaos.

Sure, I wear a smile much of the time, but that doesn’t mean the disease isn’t there. It just means I’m doing a pretty good job at covering it up. You see the mask I wear, but let me pull off the mask for a moment. I get angry, fearful, weepy and scared. Lingering in the back of my mind is the fact that one day my future will be drastically different than it is today. You see, MS is progressive. That means that although today I may be moving around okay, tomorrow I may not. It may take a year or 20 years, but my life is changing every day.

Please know that it hurts when you so casually decide you know what’s best for me. MS has affected every part of my life, but that doesn’t mean it’s made me incapable of making decisions. Don’t exclude me from things just because you think I wouldn’t want to be a part or because you think it would be too hard for me to do. Let me make that decision. It hurts more to be left out than to give a response of “no thank you” to an invitation. I would much rather be given the option. Please don’t stop inviting me or including me even if you get a lot of “No” replies.

Another thing that really hurts is when you tell me you know how I feel. Really? You understand the fatigue that never goes away, the numbness in my body, the pain, the bladder problems, the vision struggles? I have major damage in my brain and spine causing continued chaos throughout my body, and you want to try and compare your flu symptoms to my MS? Please don’t do that. Unless you are living with MS yourself, don’t even try telling me you know how I feel. Support me, help me, console me if that’s needed, but don’t make the assumption that you get it.

Then there’s the problem I have of you always trying to fix me as if I’m broken. I’m not broken. I’m simply living with a chronic progressive incurable disease. That means it’s not going away unless a cure is found…and no, there isn’t a cure yet. All those supposed cures you read about online, they aren’t cures. They are either symptom management techniques, wishful thinking, or money making schemes. Nothing has been found to completely remove MS from someone’s life. Nothing aside from a miracle! So your great Aunt Sue’s cousin’s friend who was cured using a combination of bumble bees, tin foil, baking soda and pine cones…I’m not interested in the recipe. Accept me for who I am. I’m thankful you care, but your remedies cause me more weariness than help.

Something else I’d like to say…for some reason you have this need to ask me if I’m feeling better every time you see me. As I’ve said before, MS is progressive so that question truly has no answer. Feeling better than what or when? Yesterday? Ten minutes ago? Last year? Instead of always asking me if I’m feeling better, treat me like everyone else. There are more things to talk about in life than my having MS. I don’t want that to be the center of conversation every time we meet. I am more than my MS. I am still me and would much rather talk about gardening, traveling, architecture or the funny thing I saw yesterday on the side of the road. Don’t ignore my struggle, but don’t make it a continual focus either.

Please know that I have my bad days and at times terrible, horrible really awful days. Getting out doesn’t make them better either. In actuality, going out has the potential of making them worse. Me doing more will not make my MS symptoms less. Yes, exercise is important, but it has to be done carefully. That old saying “no pain, no gain” will not work for me. If I get to the point of pain, I have pushed too far and my body is going to rebel for days, if not weeks. I have to do everything carefully and with great planning. Sometimes my bad days happen within minutes of a good moment. That’s just how rebellious my body can be. So please don’t tell me I need to get out more or I just need to lose weight to feel better. That’s not the cause of my struggle and it is not the answer to my pain.

So, the next time you decide you want to judge me for my bad days, bad moods or even my bad responses to your insensitivity, keep these things in mind…

I am the same person I was before my MS diagnosis. I am intelligent, caring, full of fun, loving, ready to laugh at any given moment, and a great friend. I also have the potential to be angry, moody, and frustrated. All still part of who I am. I would like nothing more than for MS to be cured, but as of today that reality doesn’t exist. Please don’t look at my disability as if that’s all that I am. I am still me…MS and all. The only difference is that I need a lot more love, support, care and understanding. I would much rather have someone fighting alongside me than against me.

Signed,
An MS Warrior
(Penelope Conway, Positive Living with MS)

P.S. Please share this with your friends, family, co-workers, and neighbors. Multiple Sclerosis awareness is needed all around the world.

MS Gets on My NervesMS WarriorMS Superhero  


About the Author
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.

69 replies
  1. Martine
    Martine says:

    So very, very true! Penelope, thank you for sharing these thoughts and feelings so many of us live with, but hesitate to verbalize.

    Everyone could benefit from reading this open letter.

    We all try to stay positive, but some days, some moments, are more difficult than others. The constant uncertainty can be wearing. And I appreciate that, in the scheme of things, I am fortunate. I know others with this “unwelcome passenger” who have far more challenges than I.

    Here are some comments I’d like to share that may represent a personal bias, but are comments I hear too frequently and find disturbing. Anyone else react silently (or otherwise) to these?

    “Oh, but you look so good! “ (At times this sounds more like a “left handed” compliment.)

    Another:
    “I’m just lucky God blessed me with good health.” (This brings to mind: “So, conversely, you’re saying God cursed me with this disease? “)

    Reply
  2. Martine L MH says:

    So very, very true! Penelope, thank you for sharing these thoughts and feelings so many of us live with, but hesitate to verbalize.

    Everyone could benefit from reading this open letter.

    We all try to stay positive, but some days, some moments, are more difficult than others. The constant uncertainty can be wearing. And I appreciate that, in the scheme of things, I am fortunate. I know others with this “unwelcome passenger” who have far more challenges than I.

    Here are some comments I’d like to share that may represent a personal bias, but are comments I hear too frequently and find disturbing. Anyone else react silently (or otherwise) to these?

    “Oh, but you look so good! “ (At times this sounds more like a “left handed” compliment.)

    Another:
    “I’m just lucky God blessed me with good health.” (This brings to mind: “So, conversely, you’re saying God cursed me with this disease? “)

    Reply
  3. Lori Martinelli Kibbee says:

    Thanks so much Stacey Webster. I’m sure I’ve played the nurse card way to often, and have been guilty of sending the “I cured my MS posts” this letter was very powerful. I’m here for you my friend to support and love you right where you are. Thank you

    Reply
  4. Holly
    Holly says:

    penelope— you ROCK!! go getem girl- lol perfectly put.
    thank you for the time, candidness and honesty you put into your “letter”.

    Reply
  5. Jessica Styers says:

    I absolutely love your article, Penelope. I try to be the kind of friend who doesn’t ignore my friends’ struggles, but doesn’t make them the topic of every conversation. Thanks for reminding me to keep doing that! God bless you, girl

    Reply
  6. Mary Rose Docherty
    Mary Rose Docherty says:

    Thank you for this. It’s spot on and says so many of the things I’d like to say, but does so in a far more polite way than I would likely say it.

    One thing I wish people would at least try to understand is that, while I can’t do everything I used to, I still want to have something resembling a life. I can’t stand it when people ask why I go out when (if) I’m sick. Really? Should I just stay home, with my dog, all day everyday? Don’t get me wrong, I love my dog, but she’s not really a great conversationalist and she can’t play darts worth a darn. Oh and… because I can, sometimes, play darts or maybe pool, it doesn’t mean I’m not ill. It means these are the two competitive activities I’m left able to do… after a life of athletics… I can throw a dart… Not as well as I used to, but well enough not to injure other people in the vicinity of the board!

    Thank you Penolope. Your writing has picked me up more often than you know.

    Keep fighting the fight.

    Reply
  7. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks for the encouragement Penelope I know the Rush statement ‘Plus c’est change plus c’est meme chose’. Please excuse my French it was a while ago. But what it says (or should) is the more things change the more they stay the same. The MS may make a mess of our bodies but not change the way we are.
    I have recently (like yesterday) seen the real face of MS. On Wednesday night I had a relapse that took most of my control of my body leaving me (almost) totally immobile and I couldn’t even turn over in the bed. When Janice tried to get me up I was unable to help her and ended up on the floor. She had to call our son at work to come back and help me up because nothing was working. I’m just pleased my bladder and bowel didn’t play up at all.
    After getting into my chair and feeling a bit more alive thing started to get back to a normality and I’m pleased it’s gone away for now.
    But it’s given me a taste of what could be coming and I don’t like it a bit so I’m going to live my life as much as I can when I can and not let that happen again.

    Reply
  8. Peggy Kivesh Burtrum says:

    Thank you for sharing!
    I have MS and I have found myself saying the “wrong things” to my MS friends. So don’t worry about it…. just treat friends like you would if MS wasn’t there…understanding and love and please don’t be hurt when we cancel plans and please include us in yours! ❤️

    Reply
  9. Sheila Ross says:

    I do not have MS but I do have chronic illness that requires large doses of humor, compassion and heart. Lots of heart. That’s why I follow you and thank you. From the heart.

    Reply
    • Lou Bryant says:

      Yes, so true unfortunately. It feels all too often that since it’s not cancer of some sort, it’s not important or serious, It’s not life altering, deadly, completely debilitating, unpredictable or absolutely crushing at times. People don’t seem to realise that we will likely never be able to wake up one day and say I am MS free. That fact alone takes a toll just as the illness itself does.

      Reply
    • Tanya Meyer says:

      So true. It’s a little hurtful when family, friends, or colleagues who we interact with daily can’t be bothered to learn what we’re living with. I’m tired of explaining over and over why I tire so easily, or that yes, it really DOES sometimes feel like the floor suddenly slides 3 feet sideways under my feet. Sometimes noise literally hurts me. I realize how weird it must sound to them. I just wish they’d take five minutes to Google MS and inform themselves a bit. It would save a lot of endless explaining (and looks of disbelief).

      Reply

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *