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To whom it may concern: an open letter 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 help open your eyes and heart to what life is really like for me…hopefully 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 and tell 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 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 and baking soda…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 right 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 next movie coming out. 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 exists. 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.


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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.

299 replies
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  1. Mary Ellen Vaughan says:

    The thing I hate the most is when someone says you look good so you must be getting better. There is no getting better, we just pray everyday that we don’t get worse.

  2. Christal Lee says:

    The “FDA” recommended daily Vit D is LESS than half of what we should be taking- Hospital I work at is researching lack of Vit D and MS symptoms

  3. Mary Lou Everhart says:

    I have tried for years to educate some of my relatives and friends but they just hear blah blah blah. I have tried to inform with humor and shock, no response. I have decided those that are sincere will understand me. Those that don’t give a damn will live in ignorance. I worked in labor and delivery and was well educated in womens health. But not until I was diagnosed with MS did I know much about neurological disease. BUT when a friend or family member had a medical issue, I learned all I could. I am glad my grandkids aren’t scared of my crutches or wheelchair, they are very sensitive to issues of diabled and senior people.

  4. Linda Fry says:

    Yes this is my daughters life now. She’s still herself and does very well. But she doesn’t just fight ms she fights Lopus also. Do her pain is x’s the ms pain is deeper and she still is who she always was and fights the pain everyday. Yes it’s scarey and heart breaking but it’s part of who she is. She’s strong and she’s a fighter and I will be by her Side always. She holds her head high and proud. She fights everyday. So don’t judge. Be compassionate and understanding. She is fighting a fight that no one wants. I love you Helen , you are my daughter and I’m proud of you. You are amazing

  5. Marian Fuller says:

    I truly appreciate this open letter, Penelope. These words and feelings parallel mine, all of Our feelings.
    I always hold onto the Light Of The Lord and the Bright side of life, and, Still, I am excluded from many activities. This is particularly difficult emotionally as I once held several supervisory volunteer Positions, within my church, and elsewhere.

  6. Kate Aquilino
    Kate Aquilino says:

    Great essay, as usual. But, tonight, the night before I will begin the Coimbra Vitamin d Protocol
    I’m hoping for a cure. The typical ms neuro and pharmas do not have the answer. I’ve been on the road less traveled for years. That’s where one finds four leaf clovers. Lifeis change. Carpe diem!

    • Susan
      Susan says:

      YOU DO NOT DIE FROM MS!!!!!
      PLEASE BE EDUCATED BEFORE YOU SAY THAT SO CASUALLY.
      I HAVE MS AND WOULD REALLY APPRECIATE IF PEOPLE WOULD HAVE THE FACTS BEFORE BLAMING MS FOR DEATH!!!
      MY CHILDREN WOULD BE MORE THAN HAPPY TO EXPLAIN AS THEY DO EVERYDAY THANK YOU

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

    Wow! A fittingly good amount of replies Penelope. As usually you have it nailed down nicely. I am pleased with the people I have meet and know from ‘previous’ days and their actions have been made to suit me in my ‘nre’ condition’. I still have problems but have, like you, found reasonable ways to deal with them and make life liveable.Thanks for the insights and support over the time I have been here.

  8. Kathy Botuchis says:

    Thank you so much for expressing it in a letter for others to read. The frustration is real . I am blessed that I have a sister and dtr. In law who understand. God bless you.

  9. Sheila Walliser McGillicky says:

    Thank you for sharing and giving us all some insight into this disease . Like many other diseases or sickness out there, unless we are directly affected, we don’t take the time to learn about it. I guess we are guilty of that, whether it is ms, cancer , diabetes , addiction or the other many , many diseases out there . Sometimes it takes a story like this to make us realize people are struggling everyday with things we know nothing about and we should all make sure we try never to judge , compare or pretend without first waking in their shoes . Thanks again. I know it has helped me to understand a little better .

  10. Lisa Hlubek Ross says:

    All I want is, can they not invoke the phrase “nursing home”? Things go from 0 to 10 when you’re casually explaining why you’re tired, and then they Go There. Yes it’s a reality. But you just met me/ we’re at a festive event / etc. etc., so can they just NOT?

      • Vicki Hufford
        Vicki Hufford says:

        I got a health alarm necklace that I now hang on my car window so if/when I get pulled over by the police for suspected drunk driving cuz’ I can’t walk a straight line I have some sort of proof!

  11. Ellen Johnson says:

    Great and well written,hope that the people who read it will understand that yes we have MS but it is only a part of us , it’s not who we are and don’t treat us like babies we are grown ups and we know what we are capable of .

  12. Tara Beth Seymour says:

    Thank you! A letter I shared today! I am on week two of a relapse and see some coworkers, friends, etc. don’t understand. Some seem mad at me. How to describe misery!!!

  13. Suzy Marshall says:

    My niece suffers from MS. The Open Letter about Life with MS is so true! Although she looks fine on the outside I know she hurts a lot on the inside. Sometimes it’s hard for me to get a grip on it. I want to help! I just don’t always know what to do. I love her so much. <3 <3 <3

    • Judy Good says:

      I ahve a family member whose ssiter has it and is now in an electric wheelchair, just breaks my heart, totally understand your feelings..

  14. Kim Black-McKinley says:

    Wonderful words!! I’m sharing and just hope some of my friends and family read… It’s the ones who just don’t see the symptoms that I have trouble with.. If only they could unzip me and slip on my body for 1 day… Your awesome Penelope!! ❤️

  15. Judy Good says:

    Thank you for sharing this, we can all choose to be positive or negative about our situations, i am thankful that you choose to be more positive, just choosing in regular life can be hard, i always thell the Lord, good morning Lord wnen i get up..

  16. Heather Adsit says:

    I have tried for a while to educate my fb friends.

    All I have seen is most of them don’t talk to me any more.

    I have to say… I’m not sad.
    If we can’t talk about it or have things happen and just be treated as a human by some.
    Then those who dissipear where never real friends to begain with.

    I am much happier knowing who my fake friends are 🙂

    But the constant… try this… I know someone who works … why don’t you..
    The list goes on.

    I like how you put it.

    Stop trying to fix me.

    I’m still learning symptom managment… but the whole… do this and you will be cured thing just annoys me.

    We are who we are 🙂 We may not smile about it always…. but we are stronger then the world knows 🙂

    I hope everyone who fights this daily knows.

    They are strong 🙂

    Genteel Hugs to all who have MS.

  17. Helen Rowan says:

    There’s a lot of people out there who understand what happens (ie what technically/anatomically happens) but most people haven’t. Clue how it affects day to day life. Ms is not just a case of having a flare up and recovering (or not!) , it is a daily fight against daily symptoms. It’s a lucky(or unlucky) dip everyday. Wouldn’t it be great if people could experience it for just one day ?!

  18. Gina Beth Romero says:

    “Not the cause of my struggle.” I’m incorporating this into my response to people who think they know what will fix me. How many ways can people try to fix us with diet, exercise, weight loss, or vitamins? Sheesh

  19. Daniela Robertson says:

    The part about trying to fix me is one particular thing that always gets me frustrated. I just smile, say thank you and either walk away or ignore. I know they are just trying to help.

    • Tina Johnson says:

      I had a friend who talk like that. You cannot fix me, nor does you quite understand MS and me. I just will not talk much to people who think they know. Even those who try to offer words of encouragement when you do not quite understand. I am glad I’ve made friends that know the struggle

  20. Rosaleen Rafter
    Rosaleen Rafter says:

    Some of us who have been diagnosed with MS are being ignored by family, but thankfully we have great friends, family are just showing their ignorance but thankfully I (for one) will survive without them

  21. Deborah Jeffery
    Deborah Jeffery says:

    Beautifully said! Could not have said it better. I’ve been through and going through a lot of the same situations. My friends visits and calls got fewer and fewer until they just stopped one day. They promise we’ll get together soon but soon never comes. It hurts when family excludes you and really don’t understand what’s really going on. They seem oblivious to what God is doing for me. I just want them to be encouragers and see the changes God has made and my testimony be their testimony. The worst is when I can’t remember someone or something and they keep insisting that I do. Yes I should remember, but it may come moments, hours, or days later or not at all. Just a MS moment is what I call them! I so appreciate your letter. Keep the Faith and stay Prayful! May the Lord continue to Bless you!!

    • Claire
      Claire says:

      Thank you for saying that! I know I have MS too but thanks for including God in your post! He is in charge and I’m better for His help! Keep on doing what you’re doing and God bless you as well!

      • Teresa
        Teresa says:

        Yes! God IS in charge of every aspect of our lives and bodies. Praying for us inflicted with MS and those around us for love, more understanding, and support.

  22. Lisa Darryl Doucette says:

    A lot of people don’t understand ms and what it does to those who have it I know because I experience it often the freinds we had before the wheelchair are not Thier anymore and the worst is family that don’t see you often to know what you are exactly going through.

  23. MS Unites says:

    Wow what a letter! I put it out on our page. I know EXACTLY how all that feels. Fortunately my fiance’ now is Mr. Understanding. I told him well… hmmm, better than a two years back: “I need help not hospice”, “I need love not like”, “I need support not a son”, “I need freedom not a father figure”, “I need advice not anecdotes”

  24. Aileen Brown says:

    Most of my friends and family are great my son is a bit head in the sand but it’s the way he copes so I am fine with that but is there for me but have a friend who always has to have a dig and I can do that despite being older than you and her minor ailments – but I don’t think your inspirational letter would make any difference she would never make a MS warrior lol

  25. Sandy Stanley Wygant says:

    Thank you Penelope. I needed this today as I over did it. It was a good day, decided to go shopping with the family and was out for too long. This remided me that I shouldnt be sorry for using the handicap placard or ending the trip early. Thankfully my family understands and changes plans with me.

  26. Rachel Calzada
    Rachel Calzada says:

    Will share, to make more people aware of what persons with ms experience daily, THANK YOU SO MUCH, could not have said it better, MUCH LOVE AND PRAYERS TO ALL , I am a parent of a SON with ms .

  27. B
    B says:

    Thank you for enlightening me of the struggles of a dear friend with MS, I need to do better and hope I do.

  28. Helen Lee
    Helen Lee says:

    Thank you….so very true & beautifully put! I’m 25 years downstream now. My diagnosis was at the age of 23. I had qualified as a Staff Nurse, got married & had bought our first home, the year previously. So, a life changing shock to say to the least. It’s been hard, no doubt about it, & i feel sad that I had to give up my nursing career & chose to have just one daughter. However, I’m still going strong, mentally & physically. Only through grit & determination, i have to admit! Thank you again for describing what we go through on a daily basis so well! I want to send my own mother a copy of it by the postman…

  29. Kathy Swartout-Hamilton Doiron says:

    Ok, I vote for International Penelope Day. The celebrations will include the consumption of a local favourite food and beverage, t-shirts with her image, a Penelope flag, and – of course – cookies. Lots of cookies. Let’s make it….ummmm…. every day! 🙂

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