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Well You Look Good – Understanding That You Don’t Understand

Well You Look Good – Understanding That You Don’t Understand

A lot of people have covered this topic and I have long wanted to voice my take on it because it comes up over and over but I was never sure how to really word what I wanted to express in fear that I might say something that someone could take offense to so before you even start reading I want you to know that I am not placing blame on anyone, I am just talking about how I sometimes feel and why I think I feel that way.

“Well, you look good”

How many times have you heard that? You tell someone how you feel horrible and their reply is, “well, you look good”. I hate when people tell me that! I understand that sometimes people just don’t know what to say when I describe a symptom to them, it would be like an alien from outer space telling me about a color that is not even on the spectrum of what human beings can see. What would I even say? Simple, I would say, “well, it looks pretty”. That is me pretending to understand something I really don’t. Most people just can’t/don’t understand the feelings we are describing to them and as annoying/frustrating as that is I have to take a deep breath and try to think of a better way to communicate to them what I am experiencing. Now I would be lying if I told you that I do this every single time this happens with someone, that would be more than exhausting. Most the time I just respond with a bit of sarcasm, I say something like, “too bad I don’t feel as good as I look because then I would feel amazing!”

Now I can’t stress this enough, I know that most people, in general, do not/can not understand how Multiple Sclerosis (MS) affects me, as in, me personally, emotionally and mentally. I mean most people do not live with a chronic disease that can affect every part of their body right? So what mostly annoys me is the lack of empathy; the lack of an actual desire to TRY to understand what I am going through. Most people have been sick with something like the flu, which is typically not seen as “enjoyable”. So when I do decide that I am actually going to attempt to help someone try to understand how I feel I tell them to think of a time that they were really sick (with something like the flu) and how it made them feel. Not only how it made their body feel but how it made their mind feel; how they just wanted to rest and be left alone. I know that most people with MS would agree that the flu pales in comparison to MS but remember, I am just trying to help them compare one of their own experiences with mine to try to better understand how I feel.

I Understand that I Don’t Understand

It’s one thing when people who do not have MS don’t understand how I feel but it’s another thing when people who actually do have MS say the same things. It is really difficult for me to not get angry because all I can think is, “of all people YOU should understand”. I am not saying that I think they should understand exactly how I feel, that would be ridiculous, there are just too many different factors in both this disease and people’s lives in general that can create different feelings or affect how we respond to them. What I am saying is part of me feels like most people living with MS should be able to understand the idea that “they don’t understand how I feel” because they themselves probably understand what it feels like to not be understood. They themselves probably know how MS can cause you to experience many things that are just too difficult to explain, too difficult for people to understand. But I suppose that in order to understand that you cannot understand something actually requires you to be pretty understanding.

Yes Doc, I Look Better but I am Not Better

So when it comes to people with MS not understanding how I feel I may want to be angry at first but then I remind myself that empathy is more of a skill that has to be developed over time than it is a simple emotion like “joy”, “anger” or “sorrow” so again I blame myself for not having described what I am experiencing adequately. It is no one else’s fault but mine (at least that is how I personally see it). I can’t say I feel the same about certain doctors (like neurologists), specifically those who label themselves as an “MS Specialist”. On one hand, I understand that their specialty is in understanding the disease, as in, how it works and how to best treat it. I understand that technically their specialty is not in understanding how this disease affects people mentally or emotionally, that’s someone else’s job. But on the other hand? I feel like if you do not understand every aspect of a disease (how it affects more than just the physical body) how can you really claim to be a “specialist” who knows how to best treat the person who has it?

The bottom line is over time, after treating so many people with MS, a doctor should have developed the skill to be empathetic and understand that they may not understand how someone FEELS (even if they can’t/won’t admit it). If, as a doctor, you tell me that I “look good” when I am telling you that, “I feel terrible” then how are you to understand that how you are treating me is not the best option? Yes, I can walk down the hall and back without falling on my face but that does not necessarily mean that my vertigo (for example) is getting better, it just means that I have learned to better adapt to it because though I may just want to stay in bed all day I can’t because life is still going on at its own pace so I have no other option than to try to adapt. If you can’t understand that then you can’t provide me with adequate advice on how to treat this symptom because in your eyes, the symptom that I am telling you is unbearable to live with? Is not even an issue anymore! But a lot of the symptoms MS can cause are invisible so if you simply believe in what you see? Then yeah, nothing is wrong because “I look good.”

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

Comments

  • jones86
    11 months ago

    I love this blog – I have found this piece at absolutely the right time.

    I have been infuriated by my friends, family and doctors…and I guess due to lack of understanding by others, I have mastered the art of deception when it comes to MS.

    By this I mean, I have created an exterior persona which completely conflicts with how I mah feel inside… purely because if I am truthful about it,people just don’t understand,tell me I look good, or say something exceptionally unhelpful like “life is shit and then you die”… or worse still “yeah, I know how you feel, I remember the time I had “x” blah blah blah”. I don’t feel that I can truly let on how I feel about it or how I m living with it.

    In a lot of ways, adaption and pushing on through (I run by own business so I have to!) is an extremely positive thing, but sometimes, it all gets far too tiring to keep up the show and I just want to be able to say rather truthfully without people freaking out or thinking I am a grumpy sod, that I am struggling and for them to simply listen.

    Thanks for writing this blog – it’s a comfort as sometimes other people’s attitudes towards it make me feel I am being neurotic or that because no one can see my struggle, that I am making it all up.

    Best wishes.

  • Matt Allen G author
    11 months ago

    Something I have been thinking of for a while but haven’t really figured out how I want to write it yet is that for the same reasons you mentioned, I live behind a persona because, well, it’s easier. Easier to just pretend I feel fine and nothing is wrong. But I have started to wonder if that makes people think that when I DO complain that I am not being 100% truthful because I “look fine”. Like, do they wonder if I only start complaining about this “so-called-fatigue” to get out of doing something I don’t want to do? As I said, I am still trying to figure out how to word my thoughts on this.

  • Joelle Buck
    2 years ago

    Very well said! I love the way you put the words simply but yet in total descriptive opponents facing off at a win, lose, or die trying . I relate with most of your blogs and the light turns on in my brain … wishing just wishing I had been able to share that I just finally learn my ABCs and now I forgotten them again this disease MS has definitely change the person I am the one thing I would like to say is I do believe in miracles and I do believe that they will come up with a cure for this monster that seems to take over every aspect of being.. So thanks for taking the effort and sharing so honestly and realist. It has set me free at times of bondage and pain have consumed me… my response to “that you look good”… is
    ” it’s all Smoke. And Mirrors” Lol.

  • Matt Allen G author
    2 years ago

    smoke and mirrors, most of us with MS are health-magicians! Glad you liked the post!

  • Ranger66
    2 years ago

    instead of walking down a hallway in the clinic, wouldn’t it be a better drill to walk outside in the parking lot in the heat of the day and see how that goes? 15 second observations of gait and stabilization are worthless. how about climbing stairs? moving around furniture in the waiting room? walking down the cleaning aisle at the grocery where the fumes from the fabric softeners send me into a vertigo stupor? maybe timing the amount of time it takes to button up a dress shirt or tie your shoes? these are real life examples for most all of us at one point or another. your article is a great reinforcement as i get the “well, you look great!” all the time. i always thank them and remind myself of how lucky i am that i don’t appear disabled. keep up the great work!

  • Albert Harris
    2 years ago

    That all is so true! The doctor looks at u like u are lying. I would not lie about having ms. so they take u through the cycle of having a MRI done and other tests. Only then do they agree with u on ms. It angers me . which is not good so I have to find peace so I can survive !

  • Matt Allen G author
    2 years ago

    I agree, walking down the hall and back or touching my nose with my eyes closed don’t really paint a full picture of my MS, more like, it paints one pixel of the many pixels that make up the picture of my MS

  • Richard
    3 years ago

    “He who angers me, controls me.” I am 60, diagnosed at 56, new to all of the horrors of MS. Before suffering all of these wonderful chronic, painful, depressing symptons, I had no idea what this is like. No one could have described it to me. I have had chronic knee pain since blowing a knee in 1977, but nothing like this.

    How can I expect people to understand? I have seen three people die of ALS. I can only imagine what that is like. Don’t expect others to understand, they cannot. So, don’t let it anger or depress you.

    Go forward with whatever is best for you. I have experienced acts of kindness from people since my disabilities have become more obvious. Self absorbed teens of all races and cultures suddenly stop and hold a door open for me. Little things like that renew my faith in the goodness of people. That green haired sophomore cant understand my plight. But, he still shows compassion. Dwell on these things instead of someone randomly saying, “you look good!”

    How many of you, when you stop and think about it, can remember a random act of goodness? Try. Or, start trying to notice.

  • Albert Harris
    2 years ago

    Yes ,when some held open a door!

  • Matt Allen G author
    3 years ago

    You are right but what frustrates me is that I can not figure out how to explain things to people (without sounding crazy) but they will never be able to understand, you can’t understand this stuff until you experience it yourself – I just wish people could understand that they can’t understand is all.

  • susannepaseur
    3 years ago

    I used to say that I wish we had purple dots so people would see them and say “oh, she must have MS.” Goodness knows it would be easier. My horrible walking even with my rollater “helps.”

  • Matt Allen G author
    3 years ago

    Yeah, I will always remember reading that someone wished it would turn us BRIGHT GREEN for that same exact reason – people believe what they see

  • Juleigh
    3 years ago

    Ugh!!!!! I positively hate to hear that, especially when I feel like crap! Today is the first good day I’ve had in about 2 months. And guess what? My right leg is totally numb and I keep wondering if it’s going to hold me up- and this is a real good day. But hey, I look good, right!

  • Matt Allen G author
    3 years ago

    That sounds about right, you can’t see my pain, you can’t see that I can’t see but what really matters is that I look good! haha

  • lindasragens
    3 years ago

    In my experience, I have a close group of women friends who seemed really insensitive to my struggles on a day to day basis. I realized that this was probably because I was in denial of my disease, putting on a smile and saying, “I can do this”. I hate to complain! But once I was honest with them and myself about being a sick person and really not able to do everything they can do they seemed to have softened, taking my disability seriously. I’m diagnosed with PPMS which is, indeed, worsening. We must be honest with not only others but with ourselves. When they say, “but you look good” I will say,” but this isn’t a good day” or I’m just going to go home & get into bed. It depends on who made the remark or if it’s just conversation, like,”how are you?” Most people really don”t want to know! In the supermarket I say, “I’m excellent! I don’t really care how they are, either!

  • Matt Allen G author
    3 years ago

    I should have been more specific because yeah, when people say “hoe are you”, USUALLY they are not actually asking for details but when you say “man, I am so fatigued today” and they say “yeah, I am tired all the time which is why I spend so much money on coffee” and then you try to explain how MS fatigue is different? THAT is what I am mostly referring to (for example)

  • Mark
    3 years ago

    Bravo to You Matt!
    You nailed it on a lot of different levels.
    13 years since diagnosed, Roll with the changes and keep your chin up, don’t let it or them, beat you
    Lookin Good Matt 🙂

  • Matt Allen G author
    3 years ago

    Never will! My ultimate daily goal is to make sure *I* feel good, to make sure that I DOD whatever I have to do to get through the day regardless of what others may think. Some people might annoy me sometimes, SOME, but ultimately I don’t care, it’s too much stress

  • tfs
    3 years ago

    I’m not really offended when someone states “You look good.” I am totally incredulous though. Whaaat? I haven’t washed my hair in two weeks. LOL Hang in, dear Matt. I’m glad you wrote this. I do recall being really, really angry or beside myself when a fellow MS acquaintance was not understanding MY limits. Yeah – I look good. Yup. I can drive SO FAR. Fatigue. Exhaustion. Major Depression. Numbness. Increased weakness and pain.All of these impact ability to work, familial relationships (invisibile symptoms don’t help). Hang in. Hang in. Humour is our only tactic. Or just take a step back. Self care is really important.

  • Matt Allen G author
    3 years ago

    Keep on keepin’ on – haha but yeah, without my sense of humor/sarcasm I don’t think I would be where I am today!

  • Dragon Lady
    3 years ago

    This MS patient sounded extremely angry and frustrated. I felt sorry for them. We have all probably felt like that at least a few times. But people are only trying to make us feel better. You must understand that. What else are they going to say if they don’t know what to say? You look like s__t! Please give well meaning people a break.

  • Matt Allen G author
    3 years ago

    Wait, am I the “MS patient”? haha first paragraph “A lot of people have covered this topic and I have long wanted to voice my take on it because it comes up over and over but I was never sure how to really word what I wanted to express in fear that I might say something that someone could take offense to so before you even start reading I want you to know that I am not placing blame on anyone, I am just talking about how I sometimes feel and why I think I feel that way.” keyword sometimes

  • Thomas Bellas
    3 years ago

    Thanks for this! Was a great read. You nailed it. 🙂

  • john
    3 years ago

    Very good ,well said ,I have always felt that these doctors don’t have a clue what you get from M/S . you notice I did not say pain ,well it is ,but not in the normal sense most people can under stand .M/S has it’s own pain,actually I am lost for words because the pain ,or more likly a better description would be massive discomfort that trumps pain any day of the week . Maybe a good comparison would be a tooth ache ,A tooth ache goes beyond normal pain so I think it would be a good start for most people to under stand what M/S does .It does it when it wants ,where it wants and how it wants .It took me 3 years to get a diagnosis .I am taking a set of pain pills that work together and really helps me sort of live a normal life Amphra did nothing except make me sick as a dog ,why a dog should be that sick kind of confuses me ,must be a old time expression .I used steroid shots in the legs which I gave my self ,don’t think they helped at all .I understand the new medicine called ocrelizumab has been approved and that is done with injection ,Brand name is ocrevus and you have to be accepted in the program ? how is that done ? It is used to stop the advance of PMS ,primary progressive M/S which only 5% of all people with M/S have and I am very lucky to have that ,because all it does is progress and that is what this new Med is suppose to stop ,i have my doctors appt in a few weeks and will discuss this Medication with him .he will probably say you look good .I think I have run off at the mouth long enought .Would like to add that at times I have actually broke down and cried by myself when it became unbearable .It is a terrible disease .Oh,I forgot about the tripping ,you can trip over a dime .Wow, hard to believe but true and you can also get bouts of unbalance which can last a few minutes or longer .Thanks for listening ,it makes me feel good . John

  • Matt Allen G author
    3 years ago

    I think I am going to start using the tooth ache thing. I have always said it feels exactly like a sciatica/sciatic nerve pain but how many people have actually ever experienced that? Most poeple have had a tooth ache though and that is pretty much straight up nerve pain! Oh and yeah, haha, my dogs have been sick but if I ever came across a dog who I KNEW felt like me? I would probably say the humane thing to do would be to put that dog to sleep so it doesn’t have to spend its entire life suffering, not like a dog could give up most physical activity and start writing! Old expression indeed haha.

  • tfs
    3 years ago

    I never heard that stat before about only 5 percent of people with MS has PPMS. We share that, dear John. Yech. The only meds I take are 4000 units of Vit. D. They say new research is leading to a new generation of drugs. Injection does not appeal, I must say. Take care.

  • corgi9
    3 years ago

    Matt…The next time someone tells you that you look well..Respond as follows:

    Thank you….I am impressed that you know so much about MS since looking well is one of the primary symptoms of the disease !

    When I get that comment I’ve learned to just suck it up and move on rather than get upset and exacerbate things…..But I DO know what you mean.

  • Matt Allen G author
    3 years ago

    That is where my sarcasm comes into play; I was BORN sarcastic so they may think I am just joking around but in my head? It is almost like I am being passive-aggressive. “If only I FELT as good as I LOOK” pretty much translates into what you are saying exactly only with more “cushion” haha.

  • rnhviolin
    3 years ago

    Well, I certainly try to get it and have certainly felt it almost daily. I am both a MS patient and a psychotherapist who works with many people who have chronic diseases. I think one of the things that helps them the most, is I have been down almost all the paths they have traveled. I think it feels good when someone can share their story and it matches in some way with yours. I have had MS since I was 16 and I am now 64. Short of being in a wheelchair full time, I have walked almost all the MS paths, and they are all nasty. Not one is better than the next. Vertigo for 8 years was they most difficult, but truly they all stink. Matt I appreciated your expressing yourself, it helped me, thank you. Roz

  • Matt Allen G author
    3 years ago

    I think you are the best example of a “best case scenario” regarding empathy. You don’t even have to IMAGINE what it must be like for people because YOU KNOW firsthand!

  • meissie47
    3 years ago

    Oh my goodness….you sooo get it!!!!! .This is exactly how I feel when I speak with my MS specialist. Yes I can walk down the hall for a few seconds without falling but I’m still dealing with the vertigo. Wow! You nailed me throughout this article. THANKS So much!

  • Matt Allen G author
    3 years ago

    We have to live with people and get around every day (a lot of us even have to go to work), not like we can just lie in bed all day and have everything brought to us, we HAVE to try to cope with it, do they not realize this? It is not a reflection of how we fee! UGH!

  • EileenB
    3 years ago

    Thank you for explaining it so well.
    I’m on my third neurologist within 6 months. The first only cared about putting me on research medication. The second came in acting like everything was a joke and was even inappropriate. Neither one of these two were MS specialists. The third, who is a MS specialist…well, I’ve had two appts so far and he seems to take me seriously but I still don’t think he understands the pain and discomfort.

  • Matt Allen G author
    3 years ago

    Hmm… It sucks when they are taking you seriously but still have not figured out how to really understand his patients. So essentially, he is in the learning process of becoming “empathetic”. I don’t know if you should stick it out and really try to help him understand (which long-term would help other people with MS) or if you should just keep looking, guess it depends on YOUR situation and how patient you are with people

  • Dimitri
    3 years ago

    Oh yes.

    The obsolete worst is when you get it from health care professionals. I see my neurologist for about half an hour every 6 months. So when she says “well, you look good, this medication must be working”, I’m ready to explode. But when I try to tell her that I’m not doing “good” and that I’m going crazy inside my mind she just looks at me with the most perplexed look ever.

  • Matt Allen G author
    3 years ago

    Dimitri – my neurologist has always been pretty good about this but the last time I saw him he did say “well you are looking pretty good” and I had the sudden urge to explode lol…
    Betz – this is MY standard “I don’t really want to talk about it” answer; “How are you doing today?” “oh, no better, no worse”

  • Betz
    3 years ago

    They say, “Oh, but you look so well”. I reply, with a laugh, “Looks are deceiving”.
    I have never successfully described how I feel. My answer to, “How are you?; Is either, “Fine, thanks, how are you”? Which means I don’t want to discuss it. Otherwise, just say, “Manageable”.
    Betz

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