When I'm Told, "It Could Be Worse"

By Ashley Ringstaff

3 min read

Have you ever been told in regard to your MS, “Oh, well it could be worse!” Yeah, I know it could be worse...but it could also be better. When I get told that 'it could be worse' by someone who is saying it to be rude and not supportive, it really upsets me. Don’t compare my illness and life to someone else’s illness/life. Are there things out there worse than MS? Yes, there are. But that doesn’t make what I’m going through any better. I still have to wake up every day with this disease; I still have to fight the unknown.

There is no cure for MS, and so much is unknown

Someone once told me, “At least you don’t have cancer.” And they're right, at least I don’t have cancer...but then again, if I did have cancer and not MS, at least I would KNOW more about what’s going on, and so would the doctors. I don’t think people understand that while MS does not kill you, there is also no cure, and no one knows what causes it. So, this is something that I have to live with FOR THE REST OF MY LIFE.

They're not comparable

Now don’t take what I’m saying the wrong way either. I’m not sitting here saying that MS is worse than cancer, etc. I’m saying that every illness out there is bad in its own way. There is no comparison from one to the other because if they were comparable, we would have the same prognosis, etc. But that’s not how it goes.

I didn't ask to get MS

I mean, let’s not point fingers here and play the blame game. Because I did not ASK for this. I didn’t want this. I still don’t want it, but I have it and I’m learning to live with it. Even now that it’s been years since my diagnosis, I don’t think I will ever fully come to terms with my diagnosis because I don’t know what’s coming, when it’s coming, etc. I could be in a flare tomorrow (knock on wood). That’s why I don’t think I will ever fully come to terms with it because it’s not like I know 100% that I will be the way I am now, for the rest of my life.

We have to live with MS for our entire lives

Now, in all honesty, I’m not sitting here trying to upset anyone else with any other illness, MS or anything else, I’m just venting about how I feel when what I call ‘outsiders’ give their opinion/thoughts in a very rude and disrespectful manner. Does MS shorten my life span? Most likely no, but maybe there are some of us out there with MS who wish we didn’t have to fight this battle for the rest of our lives. To have something that gives us this long to live with it, and then we pass away. Very controversial, I know, that’s why I’m not going in-depth about it. But what about those people with MS who were diagnosed a while back when no medicine available and are completely bed-ridden? Knowing they can’t come back from where they are. I wouldn’t want to live my life like that, I can tell you that much.

The impact on loved ones

I’m also not stating the above because I would be miserable living like that, but I have two young kids, a husband, a supportive family, and friends. I wouldn’t want to be like that for them. I wouldn’t want to put them through that. Am I making any sense?

So those of you who have heard, “Oh it could be worse.” If someone says that to you again, ignore him or her, or tell him or her, “Yeah it could be...but it could also be better.” Now if they’re thick-headed and don’t like to listen and they’re always ‘right’...there is no sense in arguing with a brick wall, let me just say that. ;)

Sorry for the gloomy article and venting, but I was told this not too long ago, and I just really needed to get my thoughts out there and the feedback from the MS Community, who may have been told something similar.

Anyways! I hope everyone is well and thanks for reading!

xoxo

Ashley Ringstaff

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maschabrautigam Member
Mmmm how weird I had this conversation yesterday and I find it a difficult and sensitive one.I have been told this often,and it upsets me too. it's almost like it's not bad enough.Probably because we don't die from it,unless complications.But I wouldn't want cancer either. Yes they know what and how to treat but as I was told yesterday the fear of it spreading or coming back afte 5 yrs.It is a delicate thing but I still hate it when get told at least it's not cancer.As you said,like it's not so bad. Mascha 😀
lipasi Member
Amen sister! My husband has PPMS and my heart is breaking. He was diagnosed 16 years ago and it really sucks to be him. Sometimes it sucks to be me too. I love the analogy, you are so right, with cancer or many other illnesses you know what you are dealing with. Every day is something new and not in a good way with MS. My prayers are with you honey, hang in there. Remember it could always be worse (sorry I had to do it haha). A sense of humor is soooooo important.
cmuxi2 Member
I haven't had anyone in a long time say something like that to me. Probably because I am no longer working and don't get out much. I do however have this thought in my head, don't you hate it when your own mind turns on you too. Thank you for writing about this. I too hate this disease though who doesn't. I am now 51 and have technically had this since 1989 when my first presenting issue reared its ugly head. It sure wears you down. Anyway thanks again.
jackiemack Member
You make complete sense! I agree infinitely we did not ask for this. I think everyone with an identified incurable disease feels the same. I am told I am in denial when I fall and get up by myself. Because I deny help, I am in denial? When I fall, I typically stay down taking a physical inventory, then when I am ready to get up I want to by myself. I will not always have someone around willing or able to help. I have to figure it out for myself. That is not denial it is reality. I am glad for your article. Thank You. You have to get out your thoughts rather than bottle them. There is no better place than where people completely understand.
catgirl66 Member
Whenever some disrespectful person goes "there" with me, I nod as if in complete agreement & say "yes, I give thanks every day that I don't have ALS, because while I'll have MS until I die, at least it won't kill me!" This has actually never failed to shut up someone who's trying to call me out for being a whiner, a faker, lazy, etc. Great article, as always
Member
I read your article on" It Could Be Worse" and Understand How Frustrating and Insensitive comments can be. However some patients who are Bedridden Accept and Manipulate Technology so well it makes me Ashamed to Complain! Whatever our situation is with this Disease, We must Encourage eachother and not make Anyone in whatever stage they are in feel Helpless or Worthless. If I have'nt learned anything from this Diagnosis its been realizing the Multitude of Stengths people have that they Never would of Imagined.
meissie47 Member
So glad to see this.Im in the third wk of a flare(Vertigo / dizziness / nausea)right now but I don't look like it because I'm not falling or walking like a drunk person. But trust me it's there. I opted not to do the steroids this time. Friends text and call to see how I am and it's so hard to know what to say. Especially when you hear over the phone..."you sound good"....ughhh. ..what am I supposed to sound like? Or. ..."you look good girl!" I know it's meant to make me feel better but what I hear is...."what do you mean you don't feel well?..you don't sound like it...you don't look like it. It's hard not knowing what each day is going to bring...hence the sudden bout of dizziness for the past 3wks.
Therry Neilsen Moderator & Contributor
But Ashley, don't you know everything happens for a reason? (Ducks as Ashley swings for her head with that deadly left hook she's got going on.) Thank you for putting this into words. You are getting lots of heartfelt responses over on the Facebook page.
sapphire Member
I think it is much like a cancer. You have cells in your body going haywire and destroying the healthy ones, just like a slow growing cancer. Should we tell people with that “at least it isn’t MS”?
cheyennejourney Member
I feel like if we are comparing (which we shouldn't, blah blah blah), the sad reality for me is that MS doesn't have the decency to kill me. It takes me to the brink, makes me often wish to be dead (just so it would be over), and then laughs in my face, while saying you're only 48, we could continue this battle for years. Somehow in my mind, MS is a sadistic person laughing at me, from the inside. Sorry to creep anyone out, but honestly there are plenty of things worse than dying, and in my opinion, living with MS, while it decimates your body and mind, is one of those things.
1. Erin Rush Community Admin
 Don't apologize for sharing your true feelings here, @cheynnejourney! This is a community that understands how brutal MS can be! I do hope you have some kind of support system to be there for you on this unwelcome journey on which you find yourself. And please know you are welcome here ANYTIME and you can share however you are feeling. We get it. Gentle hugs, Erin, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member. 
2. cheyennejourney Member
 <inline-mention username="Erin Rush" user-id="3987334"/> thank you.
mrairdin Member
Just say "no, no, I don't think it can get worse. I know or just have met you."
Mitch Sturgeon Contributor
Ashley, great article, and I agree with you 100%. Here's a weird distinction I draw. It's absolutely unforgivable for someone to tell me that things could be worse. How dare they? At the same time, one of my primary coping mechanisms is to remind myself that – you guessed it – things could be worse. There is no inconsistency here. Having someone dictate that sentiment to me makes me feel awful, but having gratitude for the things that are still good in my life, that helps get me through the day. As a person who has advanced MS, it's ironic that I both hate that statement and rely on that statement. Very thoughtful article. Thanks for writing it.