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 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.

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.

16 replies
  1. Eva Tordesillas
    Eva Tordesillas says:

    My daughter was diagnosed with this disease in May of 2016 at 38. I learn so much from you to better understand what my daughter is going thru. You’re right about her thinking positive of her struggles while masking the unpreductable & unexpected interior chaos affecting her moods & temperament – to keep us from worrying. It pains us her family to know she is joyful on the outside but insufferably coping inside. I do pray with your other readers that God would bring about a cure & bestow full healing to all who suffer from this disease, including yourself, dear Penelope.

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

    Thank you Penelope that is so true of us. But it also applies to others who are going under invisible problems. I say this because I live with a PSTD suffer. That is debilitating and stops a lot of socializing and going out much and trying to deal with that is hard. After all how do you deal with a feeling that rape and abuse is a part of life and is still as real as it was. I thought MS is bad but that is just as bad as suicide can seem to be the only escape. I as am aware some MS suffers can feel that way too. Really it’s not an solution just a pain for every one who cares for you. Your problems may appear to go away, but they don’t, you are just doing a favour to those that did it, not yourself. This applies to all those feelings that can arise form all situations as I have felt that many years ago and worked out of it.

  3. Kathleen Laarveld
    Kathleen Laarveld says:

    My daughter has MS and these written words are perfect. She is a fighter, a loving wife and mother and will always be my precious daughter. I love her beyond measure and she is also my dearest friend.

    God bless her and watch over her always.

  4. Jennifer
    Jennifer says:

    That was amazing and beautiful, Penelope, I admire you so much. Thank you for being there for us MS Warriors and always knowing the perfect thing to say.

  5. Tilly
    Tilly says:

    very well said.

    on the tv, the soaps etc see characters with MS being offered new treatments, yet you know from reading that they are temporary at best, and symptoms come back. one programme couple of weeks ago, 24 Hours in A&E had lady just older than I, completely immobile, her story just hit me so hard. know it was the progressive MS, knew how MS can progress, but it was still a huge shock. Programmes need to be careful how it presents it.

    I guess what I’m saying is your blog helps. thank you

  6. Rosa Scales
    Rosa Scales says:

    Ms is a terrible sickness i know a friend has it pain all time lord jesus please let them come up with a cure in Jesus Name lord they need your blessing for healing all times

  7. Rosa Scales
    Rosa Scales says:

    I know someone who has ms and she says it is a terrible sickness to have not being able to do things for yourself i hope and pray they can come up with a cure for this sickness she says it is a terrible sickness so i am praying that God can heal or find a cure I know God can heal your body in a matters of seconds so in Jesus name lay your hands on these peoples and cure them from this ms in your name sake.

  8. Rita
    Rita says:

    Wow! It is exactly how I feel. Personality; I feel hurted when pepile mention to me the “achievement” of others with MS. People who they know that are mother of 4, full time student at the university and work full time, All That At Time! How that is podible? In other words, I feel that they are saying: how come you don’t work or do much? I am not lazy or crying baby and I never was in my life. My life completlely slowly and surely changed since I got this unfair disease. If some prople with MS do many things, good for them. But I can’t. And I am not lazy. 😕

  9. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    BRAVO!!!!!!!!!!!!!!!!! Making copies to send and post everywhere. Give yourself a big hug from me. Be well. You and your words are more valuable that you will ever know. Thank you for being.

  10. Peggy
    Peggy says:

    Well said…exactly how I feel and what i want to say! Thanks so much Penelope Conway for putting it down which eas a difficult task in itself. Will be sharing.


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