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rope web with anchors tangled in knots

Tangled In the Web of Comparison

One thing that’s been hard for me about having MS is that I often feel a disconnect from other MS’ers, only because some feel the need to compete with their symptoms. As we all know MS, is different for everyone; each of us has different symptoms and various problems. Some have relapse-remitting (like me) while others have more aggressive forms such as secondary-progressive and primary-progressive. Some may say, well, you have an “easier” type of MS, so you have no idea. And, you’re right, I probably don’t, but I would never try to compare my current condition with what you’re going through.

Unique personal struggle

I want to be a friend to listen and sympathize, to let you know I understand some of what you’re going through. Having MS for me has been a unique personal struggle with many problems of my own. Just as hard as other’s symptoms have been hard on them, mine are also hard on me. They have been a part of my life for over a decade now, and I have had my fair share of difficult days. And, sometimes with MS, it can seem like others are competing or trying to one-up what you’ve been through. I think what gets to me most is when people say to me, “Just wait until…”.

Those without MS

I’m not always one hundred percent honest when asked by others how I’m feeling. I don’t like to complain because it’s not in my nature, and I don’t expect them to understand. It also frustrates me when people without MS try to offer support and tell me how they are tired too, or they are hurting as well. So sometimes, instead of telling them, I try to avoid that subject altogether and say I’m doing well. I know it’s not their intention to upset me, but their normal symptoms to my MS symptoms just can’t be compared.

“Just wait”

With others with MS though, I never know how to approach the situation when people try and “one-up” me with their symptoms that are worse than what I’m currently experiencing. My first response when someone says, “well, just wait until you can’t walk” or “just wait until you can’t ever get out of bed,” etc., is the shock I suppose. I don’t understand why when talking to someone else with MS you would say such things. Talking with someone else with MS should be somewhat of a safe place. A place of understanding and compassion because we know to an extent what the other is going through. A place to feel comfortable. But, I’ve noticed that’s not always the case. In fact, often its the opposite.

A healthy future is not promised

I’ve had relapse-remitting MS for 13 years, going on 14, so although my struggles may not be yours, they have been a significant and often challenging part of my life. They have changed me, and have caused some very unpleasant years growing up. I was diagnosed at the most vulnerable time in a teenager’s life, and that was a huge thing to accept. My body is living proof that I’ve been through a considerable amount growing up. I’m stronger and better for it now, but it hasn’t always been that way. So, it hurts when others with the same disease try to act like what I’ve been through can’t compare or tell me how much worse my days are going to get. Little do they know I wake up every day and wonder if it’s going to be the day I wake up and my legs don’t work, or I wake up and can’t get out of bed. I still continuously have my daily fears and struggles. A healthy future is not promised for me, and I know that, so I don’t need everyone else putting that in my face. I promise you not a day goes by that I don’t worry about the bad days that will inevitably come.

Being anchors for each other

It breaks my heart that I even have to write something like this because it shouldn’t be this way. I also don’t write this for pity or to whine, I once again want to vent, because I’m sure I’m not the only one feeling this way. I think we should all cling together and support one another for what we are going through at the moment. Be there to say, “Hey I’ve been there, I know how hard that is.” We should be there as anchors for each other and as a warm, friendly face or comment that is filled with comfort and knowing. I write this to say, please be mindful of your thoughts and comments. We may not all agree or completely understand each other’s various symptoms. I get that. However, we all have one thing in common; something significant and life-changing. Multiple Sclerosis. It’s not something to compare or say to the other how what they are going through is so much worse.

Hear and be heard

I don’t want to get tangled up in the web of comparison, of who’s is worse or who’s is better. I want a community to vent about my issues and feel heard and understood. It’s disheartening to feel that others in your community are trying to manipulate your experience and make it seem like it’s nothing. It’s crucial that when we open up about our feelings that we all feel accepted because when we open up, it doesn’t come easily. I am not looking for attention when I write about my experiences. I’m just looking for someone to listen who’s been in the same boat. That’s why I joined this community after many years of hiding behind my MS. I was ready to open up and know I wasn’t alone. Again, it’s not a competition, it’s a disease, and we’re all in it together.



This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • laurelynn
    10 months ago

    I totally agree with you about this. I’m very fortunate in a weird way because my dad is the bulk of my support system and he has both MS and TM (transverse myelitis –, which is a sister disease to MS – it’s damage is restricted to the spine only – no peripheral damage – and there is no hope of regeneration ever. He’s had them for the past 27 years so he’s very familiar with the symptoms and all that and he helps me fill in the blanks when it comes to describing new sensations and pains etc. – and he’s just incredibly supportive and amazing all around.

    Autoimmunity runs in my family, and both my sister and I have endometriosis (I also have Graves Disease, if it makes a difference). And I don’t know how else to describe it except to say that she’s always competing with me for who has it worst. One – I cannot think of a dumber thing to compete over. Two – like you said, everything’s different for everyone.

    The way I’ve come to explain it to people (including my sis, and it’s helped A LOT) is that everyone – sick or healthy – experiences pain on a 1-10 scale in their lifetime. For the average person who isn’t sick and doesn’t have to handle body betrayal, a 10 is the loss of a loved one or a broken limb (emotional/physical). For us spoonies ( that scale is ever evolving and our 10 is constantly shifting – whether in terms of physical, emotional, mental or spiritual pain.

    But the point remains the same; just because our numbers are in flux doesn’t mean that they don’t correlate with real life events, and it doesn’t mean that others can’t understand our pain. Sure, they can’t necessarily understand it specifically – not having had the disease (or even having it, it still varies person to person because each person has their own physiology and a lifetime of interpretation of their experiences, and no two people see things exactly the same way), but people can sympathize and in some cases empathize. And that’s where we should be when it comes to relating to one another, that should be our goal.

    I get what you’re saying, and while I’m sorry you had to endure those hardships – look at the amazing results of your having shared them. You do have a community of supporters – and those that act as you’ve described? It just stems from insecurity and having not accepted the reality of their situation.

    Thank you for sharing and being so open with a bunch of strangers. Much love and many spoons to you! <3 🙂

  • Calie Wyatt moderator author
    11 months ago

    Wow, I’m blown away by all of your kind words and support! Thank you all! Wishing you all the best ❤️

    Much love,


  • Carol
    11 months ago

    Wow, thanks for writing this. I kept feeling myself nodding my head over and over again as I was reading your story. I agree with so much of what you said. I think it will help all of us.

  • ss46sh
    12 months ago

    Hey Calie
    I joined an MS support group in the early 90’s. I was diagnosed in 1986. I stayed for only three meetings as the MSers were too negative about their lives. I am a competitive person and I battle MS as if it were an opponent on a playing field or court. I too sometimes wonder if tomorrow I will no longer walk or the pain will prevent me from enjoying my grandchildren. Since we come from such a variety of lives none of us can truly know how other MSers are doing. I agree we only know how our MS effected our past and hopefully will be gentle in our future. Our newly form MS support group is much more grounded in sharing positive life situations. We also discuss solutions for others unable to see how to improve their lives. We are trying to be MS strong

  • jrhennessey
    12 months ago

    Dude he’s are the people you would hang out any heart with anyhow. If you met them you didn’t have a mess neither did that you still would want to talk to them they’re just creeps

  • jrhennessey
    12 months ago

    My bad i use talk ro txt. Basically what I was trying to say was taking MS out of the equation and you would not hang out with these people anyhow. They are
    just jerks

  • NmsB
    12 months ago

    Very well said and thank you for saying it 🙂

  • mm26
    12 months ago

    Thanks for sharing. Having MS is lonely sometimes, maybe, most of the time. Shocking that someone with MS would be so insensitive and say “Wait until you can’t walk.” That’s a bitter person. I’ve never had anyone with MS say anything like that to me, so far anyway, but I am really never around anyone else with MS. I’ve had a couple of extremely insensitive remarks from people without MS. It hurts. As others have commented, we are in this together, and really no one CAN understand what we go through with MS, no matter our symptoms, the way someone with MS can. So hang in there. I understand what you are going through.

  • jrhennessey
    12 months ago

    Amen sister

  • Swissmissme
    12 months ago

    Bravo ~• I agree that person was so internally bitter and I will add angry and depressed. I live in a 55 and over complex in La Mirada. When I moved in I used a cane . Piriformus muscle in right hip and Restless leg has then undone PT and swim Therapy muscle my spasm in right leg sciatica ~horrible.
    People want to help me here but for things like opening the door is appreciated because I am in electric wheelchair my knee in right leg I can’t move or walk with it or stand without difficulty. When asked how r u I usuaally say Good, Fine how R u? I also have NASH which has my liver slowly declining- I can only take shots wi Copaxone because of NASH.
    I miss my walking life. I miss my independent life. Thank you for listening.
    My kindest regards,

  • jrhennessey
    12 months ago

    I really agree on the walking thing. Sometimes when I’m sitting in my car and I see somebody walk or run i just think an hope they understand that that is an amazing feat.

  • jrhennessey
    12 months ago

    Boy here just saying I know when my sister and I go out to dinner she knows I want to be independent so I’ll get it from the table and she’ll start walking to the door and I of course take 10 minutes to get up from the table locked the door and people look at her and go what the F that girl got her so insensitive to her friend. No she’s not she’s respecting me.

  • Kimberlybthatsme
    12 months ago

    Oh my Gosh it’s like I wrote this or something…I was JUST dealing with someone in a FB group for Ms’ers who is constantly one up’ing everyone or actually questioning their diagnosis! He’s been complained about from several people. It’s crazy to me that we can’t band together knowing each of us has our own different journey and hardships and symptoms with this ugly disease! Thank you so much for writing this and if you don’t mind I’m going to share.

  • lcal
    12 months ago

    Hi Calie
    So, I’ve been in this web of heath crap since I was 19 yrs old and at nearly 51 there is so much in I would love to say in support of you because the thought of ppl being so callous with their words to others is sad. I think I have shielded myself from a lot of that by being very chosey who I am honest with about realities, while blocking out the stupid comments that sneak bye
    We all have enough everyday stress fighting thru whatever individual things have been given to us that day without having to feel even worse with comments weather they are meant to help or not. I think of it in terms of if I’m on a sidewalk and I hear traffic coming but don’t see it I choose to not take the chance of stepping off and being hit unless I’m + there is no traffic.
    Can you tell how angry I am that anyone would be dumb enough to say,” well wait until”???

  • tigersleeve
    12 months ago


    Shout it from the top of the radio mast!
    Succinct and incisive.

  • corgi9
    12 months ago

    As far as the nonMSers go, sometimes they just don’t know what to say so they are trying to bond with us in a strange way by being part of the human race who are suffering in one way or another…BUT…for the MSers who treat you like that there is no excuse…so as water rolls off a ducks back just cast them away from your life…in one ear and out the other….I am in my 39th year with MS….whether we’ve had this disease for 1 month or 39 years…still standing, in a wheelchair or anywhere inbetween…we are all in it together. Your friends here are with you.

  • Nani
    12 months ago

    I have primary progressive MS. The symptoms really started getting worse and that was diagnosed in 2011. I’m in the wheelchair now.

    I was trying to explain to a friend of mine who is almost a shame to admit that she was suffering with a foot problem because “I have it worse.” But that’s so not true. I have my demons and challenges that I live with everyday and I deal with them the way I have adapted to. She was fine one day and then the hospital the next in pain. She doesn’t have an adaptation for that pain because she was suddenly in that situation. Right now she has it worse than I do.

    I kind of look at RRMS in a similar way. Because MS is so unique there’s no guarantee that someone with relapsing remitting will ever become progressive. The whole “just wait” comments are uninformed and cruel. I try to move my legs everyday and it’s just frustrating exercise with primary progressive MS. There are lots of daily uncertainties with relapsing remitting MS that I don’t have. How could I ever compare our struggles?

    I have quite the opposite problem because I am in the wheelchair. People want to be helpful all the time and it sometimes feels like they automatically think I can do nothing. That’s even true with others who have MS at support gatherings. That one upmanship is a challenge we all have to face. Whether it’s someone saying “My struggles are worse than yours” or someone saying or thinking “at least I’m not as bad as you.”

    I think, at least I try to be this way, that understanding and accepting each others challenges as being unique to each of us is so important. We should stop trying to evaluate the validity of someone else’s challenge and encourage each other to adjust and beat those challenges.

    I am so sorry that you’ve had to deal with anyone who’d ever say that you have it “easy” in any way, especially from anyone else who lives with MS.

  • Dianne Scott moderator
    12 months ago

    Hi Calie,
    You’re article speaks volumes. There’s should definitely be no competition between those of us who battle MS…just support of one another. We are, as you say and I agree, all in this together. 🙂
    Stay strong,

  • BlessedEvenWithMS
    12 months ago

    Thank you, Calie, for verbalizing something I felt for a long time in the MS community. MS attacks me from the neck up…, speech, swallowing, serious cognition issues, etc. Between relapses, I appear normal, but struggle with invisible symptoms My MS friends that suffer physical disability continually tell me I’m lucky I don’t have to struggle like they do. I do consider myself blessed to have the invisible symptoms with mental vs physical disability, but hoped the MS community would be more empathetic than the general population. Guess “seeing is believing” applies to most people. You said it best…same disease, different symptoms. Thanks again for sharing. Wishing you the best!

  • fng1
    12 months ago

    I completely relate to your frustrations. It is a shame that those with or without MS are so judgemental and almost catty about such a damning situation. I am constantly treated like I am making up my spinal pain b/c no one can actually see it. Like we all have to be in a wheelchair before we are taken seriously? I am thankful every day I can walk, but is always lurking in the back of my mind. Not to mention any loss of any function throughout the body…thank you for saying what you did. What are those responsible competing for anyway? Last place? They can have it.

  • Beau
    12 months ago

    Ah yes, The competition comparison game. It is for this reason I don’t do any Facebook MS groups anymore. Anytime you throw thousands of people together in a group with varying conditions there Is going to be bickering.

    For years I had relapsing/remitting MS and used to hear how “lucky” I was. Now 25 years later I can’t even stand and I point out to other people with MS that’s the exception rather than the rule. EVERYONE is different with this including responding to treatments.

    My point is I’ve been on both ends of the spectrum and totally understand your frustration with the competition comments .


  • Tess
    12 months ago

    Hi Calie. First, I love your article and I empathize with you. Secondly, I run into the “One up” crap all the time, especially by one neighbor. She asks how I am today and I say, very fatigued and legs hurt. In reply I get I’m tired too and back is killing me and shoulder hurts. You should apply ice, take Tylenol and you’ll be fine. I asked her, do you know the difference between fatigue and tired? Oh they’re the same, just take a nap. Calie, this is called ignorance and I have learned to let it slide off my shoulders. Narcissism is another trait I loathe because these people will always try and out do you. Just let them…it’s not worth your aggravation. Third and lastly, please feel no hesitation, ever…to reach out to me to talk, vent, cry, whine, laugh or any other emotion that comes into your heart. In turn, I will do the same. I love this forum and do feel safe here. You should too. Ya just got weed out the “it’s all about me” folks. Have a fabulous day Calie. One without any symptoms I hope.

  • mangosoap
    12 months ago

    Hey Calie,
    I loved reading this post, I also have Relapsing- Remitting MS and I felt everything that you wrote I can also relate to!

    P.S i think this is one of the first comments i’ve made on here haha

  • Tess
    12 months ago

    Well it is a nice and great first posting. Hope to see many more.

  • rayche
    12 months ago

    All of this writing has been difficult to read but had a wonderfully supportive effect.
    Yes,it’s way too hot out(UK,city-bound)and tomorrow my dear sister will moan about how she did this,this and this,and is now SO fatigued and exhausted and I’m thinking-wow! that sounds like an exceptionally good day for me(getting stuff done…oh,it is good to rant!yes,we are all different I guess,and maybe this is encouraging me to withhold my own judgment?…Anyway,we are incredibly strong people,many good thoughts to us!

  • Julie
    12 months ago

    Yes, we should be each other’s cheering team. We can’t (or shouldn’t) compare each other’s walk in this journey. It’s tough enough that the rest of the world doesn’t understand it so let’s not tear each other down.

    This is my problem with comparisons. My mom (I love her dearly) told me that her sister told her a woman at her church has had MS for most of her adult life, she’s in her 70’s now and still going strong. Now, while I happy for this woman, mom doesn’t get it of course. She wants to see her daughter up and going strong.

    My point is that we get these comparisons from others, let’s not do it ourselves.

  • ASAPcindy
    12 months ago

    I don’t recall other ms people comparing their disease progression to mine. When I meet someone with ms to don’t ask for a litany of their symptoms, I usually just smile and congratulate them on fighting the good fight and they respond in kind. I avoid talking about my disease unless I’m at my doctors. I find the only thing worse than having ms is having to talk about it. Other people with ms know the score. If its not this symptom today it maybe tomorrow or something else. What bugs me more is someone without ms saying, ‘I woke up with my arm asleep. Now I know what it feels like to be you.’ My stock answer is : yep, it sucks to be me.

  • remr1
    12 months ago


    Keep going. I haven’t heard any of these comments yet because I’ve been mostly isolated. These comments will come and you opened my eyes to knowledge to when they do come.

    Thank you for the insight.

  • Dorry
    12 months ago

    I agree with what you say. You have MS and this is the place you should vent and be Validated. No one should compare there MS to yours. As you say each individual has different experiences. A lot is down to plain IMMATURITY. Needy people don’t want to listen to others. We have to choose our confidants wisely as we can’t share with everyone as some can make it a competition, or compound your pain. Now that would shut me out and I wouldn’t want to share with anyone ever again. It is respectful to listen and validate what someone is going through. We will meet tactless people who make it all about them and others, who just don’t know how to be supportive. Just VENT here. A certain amount of grief goes with MS because you have lost who you were and now have to adjust to being a new You. This is not easy. Compassion and good manners don’t cost anything. You have my attention and I am really sorry for what you are going through now and how it has made you feel so isolated and alone for a long time. Now this adds to the pain of MS. Try and Nurture yourself with good things to build yourself up and find a platform for healing. I have an insensitive G.P. who is more worried about my weight than the weakness in my legs and not being able to walk. So I know how it feels to not be heard. How can someone with weakness and pain in the legs exercise? It is usually the invisible symptoms that engage prejudice because it can’t be seen. Now if one tried to walk on broken legs in a cast people would think there was something mentally wrong with them for trying to walk. You must feel frustrated having to re-educate people about MS when you speak so loud they don’t hear. I hear you and I picked up your sadness about not being heard on those bad days when you need someone and no one is there. Keep writing and express your feelings because this is the place to Vent.

  • jn99
    12 months ago

    Thank you for writing this, Calie! I do not find it the least bit helpful when I hear, “at least you can still walk” or “you are lucky it doesn’t affect you” (my symptoms are not always visibly evident) or “yet”, as in ‘you don’t have this symptom or X hasn’t progressed “yet”‘. It’s hard enough and scary enough to have the disease and the sxs I do have at the level I have them; it isn’t helpful for me when people either discount my current challenges that are real or predict a nasty progression about something that is not predictable and no one fully understands anyway. Emotional support and physical assistance when needed are the responses that are helpful. Again, thanks for putting it to words.

  • fitzppms
    12 months ago

    Agreed Calie! We need to be pillars for each other. I have people around me that try to assimilate to my conditions and it drives me nuts. Always stating I’m ____ too whenever I say I’m hot or tired.

  • Lisa2014
    12 months ago

    Thank you Calie I you said exactly what I think I hope you are doing well today

  • LuvMyDog
    12 months ago

    I am now 72 years old….WOW…did I just say that??!! It’s been hard wrapping my head around that reality.
    Time flies when you’re having fun….and even when you’re not.
    I was diagnosed with relapsing/remitting MS 37 years ago. The first 20 years weren’t what I’d call all that bad. I’d have a flare-up, rest for a few days and usually feel better and go on with a very busy life.
    Yes, there was a little more to it than that but why go into details that we’ve all heard over and over again.
    The last 5 years have been pretty crappy to say the least. This disease has aged along with me, and not well.
    The fatigue has gotten very bad, the pain takes everything out of me most days but, life goes on, and that’s a good thing.
    People seem to have a need to compare their lives with others, to compete….their struggle is worse than…..??
    Really, and how do you know that, do YOU live my life, walk in MY shoes??!!
    When I am asked how I’m feeling, my standard answer is a simple, “okay, thanks”. Some days, some really bad days, I will occasionally say…”you really don’t want to know.”
    With that, a disgruntled and disheveled cashier in the grocery store said to me, “yeh, well you have no idea what it’s like dealing with a husband who drinks and three kids who don’t listen!”
    I laughed for a second and said, “No…I’m not someone who would put up with that and if you’re that unhappy, you shouldn’t either!”
    Her reply to that….”you’ve got it pretty easy then.”
    I didn’t say anymore. I don’t share my pain, my fatigue, my insomnia, trouble swallowing, my eye problems, numbness, tingling, spasms, cog-fog, being off-kilter, sometimes looking like I’m drunk….I don’t drink, and how 37 years of a disease has changed my life.
    It’s not a competition. I wish more people realized that.

  • Dasjaikit
    12 months ago

    My MS is no worse nor better than anyone else’s MS because regardless of the type it is still MS and it is rubbish. Not only does it bring with it a whole host of symptoms it is a “hidden” ailment so you can find yourself having to explain it many times to folk.
    The last thing we need is a competition among ourselves for chief of the symptoms. It’s hard enough to have it and be a posterchild for it at every cut and turn. And if I have to explain how it is nothing to do with ME again…its enough learning about MS without needing a passive knowledge of ME too.

  • Lgray
    12 months ago

    Hey Calie
    I’ve been suffering from the opposite problem lately!
    I’m on an MS site with other MSers… And I answer questions, ask questions and generally try to let people know some of the weird things I go through.
    Almost all the responses I get are like… “I never heard of that. ” or “that’s nothing I’ve ever seen” or
    “that’s something else. Are you sure you’re talking about Multiple Sclerosis?! ”
    I still, to this day, feel the heaviness of other people’s doubt.
    It really sucks when I’m advised by other MSers that the key is exercise and diet or that I just need to get out more.
    You know… All those things you shouldn’t say to someone with a chronic disease!

  • Annie
    12 months ago

    You found the words to say so well what I feel all the time. Thank you for writing this. It felt really good to read this. I felt like I was not alone on this island I live on.

  • ymlima
    12 months ago

    Bravo Calie! You put all those feelings so many of us have into such eloquent words. Be well. Be safe.

  • sheri1965
    12 months ago

    I joined this group to hear about others experiences but every time I get a comment, I have to pass on reading it. I just can’t handle the long drawn out crying and list of misery. My mother passed away a couple of years ago with severe secondary progressive ms. My older sister is currently battling rapidly deteriorating function and progressive ms. So my 21 years of mild ms symptoms seem ridiculous to even discuss so I don’t. Why don’t we talk about and compare medication regime and how well it has worked. Exchange positive suggestions on really good equipment and therapies? I have been a Home Health nurse in Texas since before my diagnosis and have taken care of many ms clients. Some medical and much with in home programs for custodial type help. What Medicare doesn’t cover. I think we all are plenty familiar with symptoms and struggles. They are all similar. Let’s offer productive conversation rather than rehashing the same pity party all the time. It’s not healthy.

  • maggydoots
    12 months ago

    Amen, sister! ❤❤❤

  • flyinglow
    12 months ago

    Humans are so competitive- even when weare unwell!
    There are nice people with MS and unpleasant people with MS, just like every single type of person I am afraid. If someone is unhelpful and negative, ignore them and dont reply. Connect with the people whos attitude seems open. Life is too short to waste on hoping that everybody is nice!

  • Jdenkinger
    12 months ago

    I so totally agree! I also have had MS about 14 years but find from reading or hearing others stories… I have it lucky. But that doesn’t make my journey any less difficult. I have 1 really bad flare once every 4 years or so. But mostly my day to day is uneffected.

    I do agree with you though, regardless we all need to be there for each other.

  • Harleydog1
    12 months ago

    Sounds good to me

  • Jain
    12 months ago

    Hello , Cailie. I’m very sorry to hear that you have to experience that. I absolutely agree with you , MS shouldn’t imply any competition between us, but in the opposite ,it should raise awareness and mutual support.
    Stay strong and remember that opening up about it is a good , healthy thing.
    Take a good care of yourself.

  • Alina Ahsan moderator
    12 months ago

    Thanks for such kind, supportive words, Jain! Our community here at does a great job of uplifting each other – thanks for being a part of it 🙂
    -Alina, Team Member

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