My letter to the “normals.”: From about 1... - My MSAA Community

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My letter to the “normals.”

TexasLawman profile image
19 Replies

From about 10 yrs ago:

I should warn you that you should grab a snack and a drink and hold on to your ass.

My Letter to the Normals:

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.

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TexasLawman profile image
TexasLawman
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19 Replies
twooldcrows profile image
twooldcrows

yes you put it all in this text now if you could get the people out there that doesn't have it to READ THIS for no one wants to know about it ...i am so sorry that is why i just live it my way and do as much as i can and that is it ...like you said WE ARE STILL THE SAME PERSON ... we just are fighting it our way....great thank you for the post it is great....i agree love and happiness is our greatest meds....

jimeka profile image
jimeka

Well written TexasLawman great read, I am going to forward it to my children to read. Thank you 😊

TexasLawman profile image
TexasLawman in reply tojimeka

I think it’s what got my Mother on board.

jimeka profile image
jimeka in reply toTexasLawman

It’s worth a try. 🤗

Peruzzot profile image
Peruzzot

WELL SAID!!!🤗🤗🤗

Amore55 profile image
Amore55

I have numerous people in my life who need your post. Thank you for such a well written piece. Love, Kelly

LadyLeo profile image
LadyLeo

"Bumble bees, tin foil and baking soda ". Best line EVER!!!

Truly, a well written, well said and deeply felt sentiment. Wish I could put these words on a hoodie and wear it. 👌🏽💚🙏🏽😊👍🏽

pamgarner profile image
pamgarner

said it all! thanks:)

Mermaidia11 profile image
Mermaidia11

@texaslawman You hit the nail on the head there cowboy!

I am screenshotting this for my children, friends and family. Will they be interested in reading this?

Hmm , after 26 years maybe not...I think everyone gets MS burnout - Because everyone is expecting some sort of recovery, Or a better day, (the patient included)

Loved the line ‘for some reason you have this need to ask me if I’m feeling better every time you see me’

It’s a cold slap in the face when it doesn’t happen and other people still expect it, and feel it’s something that we have, or have not done... I’m getting frustrated on your behalf, my behalf; and everyone else’s! And agree with what everyone has said as well

When it’s a toss up between having a shower and eating, you know It’s bad

Thank you cowboy for writing the words we all wish we could articulate...

Jolly well said anyway cowboy – one day at a time eh?

A

Kenu profile image
Kenu

What a great Post TexasLawman👍. Well written and right on point 🙏😊 Ken 🐾🐾

kathyrags profile image
kathyrags

WOW!!! you've said it all! I always think, yes I have ms but I'm still Kathy. I really hate it when someone tells me about a great new restaurant and then proceeds to tell me if accessible, the parking... If I want to know I'll ask you... bitchy maybe but it ruins the whole conversation for me.

mrsmike profile image
mrsmike

TexasLawman , I'm speechless. I'd like to share this with everyone I know. THANK YOU!

Sandydemop profile image
Sandydemop

Hallelujah and amen. The people who care about me want me to get better and I appreciate that. Some days are better than others and I tell them if they really want to know which it is. I am doing everything I can to improve my health or at least stabilize my strength. I know you are too. I agree with the group. WELL SAID

IFwczs profile image
IFwczs

Your post actually made me cry... I guess I am having a bad day.

TexasLawman profile image
TexasLawman in reply toIFwczs

I’m sorry.

JTZES profile image
JTZES

Texaslawman,

If we could get your well written words out to the general public. I'd love to see it as a trending topic on Twitter.

I'm not on any of those sites but if anyone that responded to you could share it with the general public it would be great.

This was very well written and passed on the compassion we all deserve or should have the opportunity to have.

Thanks!

TexasLawman profile image
TexasLawman in reply toJTZES

This and other writings are part of a memoir I wrote which I had to send to the AUSA and the DHS for approval to try and find a publisher. Thanks for the encouragement! ❤️❤️❤️

carolek572 profile image
carolek572CommunityAmbassador

Very well and thoughtfully said, TexasLawman Keep Smiling :-D

mrsmike9 profile image
mrsmike9

Perfectly stated!

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