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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.

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  1. Mark John Milligan says:

    This is an outstanding letter that I wish everyone I know would read, because it says so many things that don’t say to them and don’t tell them about. My wife has told me that I present very well to everyone to the extent that they think that nothing is wrong with me but that is not the case and this letter brings forward so many of the issues I face every day. I hate having MS and also seeing the challenges others with this condition face. Thank you for this letter as I post after just under three hours sleep for yet another night. x

  2. C.j. Patrick says:

    I pray each & every day that a cure will come & soon. I wish I could take every ache, pain & problem from you. You have all my love & admiration!

  3. Jacinto Lopez says:

    Thank you for your testimony it will give even more to try understand the illness. Stay brave and positive for all the people who are living with MS.

  4. Tracine Hummel says:

    Thank you! Very well written! So many people tell me ‘ I know how you feel ‘!!! In reality they don’t have a clue! MS has affected every single part of my life! I miss the old energetic, hard working me every single day! Some days when I have a little energy I over due it then I am down for 2-4 days.

  5. Martina Reck says:

    This is so well written. It’s so annoying that quite a lot of people are quick in judging you the wrong way. Then you get clustered as an constant drunk person and stupid

  6. Mel Palmer says:

    OMG some of this was perfect. Talking to my sister (also my boss) recently, and we were discussing whether something was normal fatigue or not, cos it’s been 10 years since I saw ‘normal’! In a very frustrated tone, she snapped ‘Stop blaming everything on your MS.’ This article just just justified me doing exactly that, so I’m bloody grateful to know I’m not the only one that thinks like this!

  7. Fiona Clair Hitchman says:

    I am relapsing atm, im wearing concrete wellies wading thru mud while feeling numb down my left side. This letter really sums it up for me. Thank you for sharing, its comforting to know ppl know what its like xx

    • Fiona Clair Hitchman says:

      Absolutely and the fatigue is just unrelentless. I have 3 young boys so i need to get out of this relapse asap. But as u know the more u stress about, the longer it will take to recover 🙁

  8. Barbara Crawley Adams says:

    Thank you. I have recently been diagnosed, but have been having symptoms for years. I get this, so much. And, everyone keeps asking me if I feel better…and I wonder, from what? I do have neck issues also, maybe that, but they don’t say it.

  9. Debbie Montgomery says:

    Sooo very true! I don’t think anyone I know personally or even most Doctors or Health Professional understand it! Even with all the proof of Lesions many still seem to think it’s nothing more than fatigue & stress, & you will feel better soon! It’s not just in my head nor did I do anything to cause it so I can’t fix it!

  10. Case Parrilla says:

    Everything written is so true. MS does not define me as a person it’s just something I deal with daily and no-one understands because I look fine. ugh. ♡

  11. Melany Kimbler Farr says:

    Excellent letter. I would add a couple of things.
    1) On days you see me walking without my cane. that doesn’t mean I’m ‘all better’. It may mean I only have to walk a short distance so I decided to risk it, or it may mean that I know my husband or son will be with me the whole time that I can turn to for support. It may mean I’m feeling particularly scrappy and furious at MS that day and I am foolishly refusing to use it, and I always pay for that later.
    2) When I mention my MS and especially when I make a joke about it (if I can’t keep my sense of humor this will kill me) don’t stare awkwardly into space like I said ‘Voldemort’ and change the subject. That dismisses me, my fight, and even the fact that I’m ‘winning’ at the moment by being able to joke.

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