Describing MS and its Symptoms

Describing MS and its Symptoms

If we stumble, fall and snap a bone, we are obviously ‘broken’ and need to be fixed by our doctors and often require assistance from our family and friends. No one questions if we need help and medical care.

When we get sick and have an elevated temperature, it’s easy for others to see the proof that we are ill, and we might need help from our doctors and an extra dose of compassion and help from our family and friends. It’s obvious because not only do we  say “I’m not well,” there is physical evidence such as x-rays  or a thermometer reading.  In these circumstances, everyone believes us when we say we are sick – they don’t even have to see us in person to get their proof.  They will take our word for it via a phone call or someone else sharing the news.

When people don’t believe you

So why isn’t it that easy for so many people to get others to believe they are sick with their Multiple Sclerosis?  We hear others talking about how their doctors, friends and even family don’t quite want to believe they are really sick.  I’ve read of people being chided and even ridiculed that they were using their MS as an excuse to not be active, to not clean their house,  not go to work, etc. etc. etc…..

For years, long before I was diagnosed with MS,  I stated if someone says they are in pain, they have to be believed.  Just because we can’t see pain doesn’t make it unreal, and I always want to at least begin by setting aside any doubt and believing the other person.  What is it about MS and its symptoms that are unbelievable?

When people say, “but you look so good”

With so many of the symptoms of MS  invisible to others, the larger question remains – how do we break out of the ‘but you look so good’ syndrome that can trap us from being taken seriously and believable. Patient reported outcomes (PROs) are gaining attention in the MS medical community as a legitimate tool to measure how we are really doing day-to-day.   These PROs are the way our invisible symptoms can be better understood, and this leaves us with a new challenge – how do we state PROs in a way that clinicians and researchers  will clearly understand.


For example:

How do we paint a picture of fatigue? At your next appointment, when you are asked ‘do you have fatigue?’, don’t just answer yes (if fatigue is a problem for you). Tell them how you are fatigued, such as ‘fixing meals for my family has become almost impossible because it takes so much out of me.’  Or if you have had to alter your routine because of the fatigue, give the details.

What makes our balance problems so difficult to explain?  Don’t just answer you are off balance – again give examples such as “ I avoid high places because I feel as if I will fall over the edge. “ Or you’ve stopped picking up your small children for fear of falling with them. These are real examples that make it easier for others to understand what we experience.

Because we ‘look so good ‘ we must find the words to explain the symptoms that interfere with our lives the most.  If we get better at describing how MS is messing with us by using more descriptive Patient Reported Outcomes  to our doctors, it might help us  to explain our problems in greater detail to our family and friends. Do you have ways to describe your MS symptoms that help others visualize what you go through?  Please share them –we need all the words we can gather to describe our problems.

Wishing you well,

Laura

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

View Comments (13)
  • Trisha
    3 years ago

    What’s frustrating for me is trying to explain what I’m feeling and the difficulties I have with walking more than 20 feet to my husband. If I walk more than 20 feet my legs especially my right leg gets this feeling of extreme weakness and a weird sensation that I don’t even know how to describe. One problem is that because I’m only 33 years old my husband believes that I’m fine and that I’m too young to have these problems. One thing that really annoys me is that he thinks that I’m using MS as an excuse and that I’m just lazy.
    Because my husband does a lot with computers, I tried explaining my MS as a like having a computer virus, some of the signals that go to our nerves are either very slow or don’t work. But nothing I say works, I’ve been trying to explain MS to my husband as well as others, for 6 years and I’m so tired of explaining.

  • 1net986
    3 years ago

    I have had similar trouble early on with my wife together we have sought spiritual guidance that really has been a help! I was diag. 8yrs. ago and am also an alcoholic! One does not help the other,but just prey that your partner is just that,a partner!

  • Dianna lyn
    4 years ago

    One more thing..family? They are all in denial and don’t want anything to be wrong with our family, yet ..cousins are dying of heart complications due to MS all around me anyway, just venting!

  • Dianna lyn
    4 years ago

    It’s frustrating when I tell my doctor my PRO’s to him, yet he will not respond?? In descriptive detail such as..okay I am slow it takes me 3 hours to cook dinner, and yes I have mornings that I just can’t move? The doctors are not recognizing MS as a disease and until they do, we all fight for more awareness?? Anyways, thanks Laura for your report, as always, very informative..

  • 4 years ago

    i have never had anyone tell me they didn’t believe me, but just saying i’m not feeling well doesn’t begin to get across what i’m feeling. “i’m tired,” or “i’m sore,” doesn’t either. people ask how i’m feeling, and if they really want to know, i say, “how much time do you have?” broken bones, a cold or flu need no explanation – everyone knows what those are. ms symptoms require a conversation, and people usually don’t have the time for that.

  • Laura Kolaczkowski author
    4 years ago

    So true about the time with casual conversation but I hope there are words you use with your providers and people close to you to give them better insight. best, Laura

  • mascha
    4 years ago

    Yes totally agree and love your article.Problem is that i find people dont want to listen,even if they ask their attention vanishes.Family members the same,dont want to hear about it…almost like we are making it up,as we look so good.Doctors dont take time to listen as they are rushed and even had my doctor say’deppressed’?but you look so good.

  • Laura Kolaczkowski author
    4 years ago

    I envision the usual conversation being something like –

    doc: tell me what might be your worst symptom right now?
    patient: I am just so tired.
    doc: ok, let’s give you something for being tired/here’s some pills/get more sleep/etc

    OR if we are able to describe the tiredness it might be something like this –

    doc: tell me what might be your worst symptom right now?

    patient: I am so tired I am unable to pack the school lunches for my kids and my husband has to do all of the car pooling, which means lots of times the kids can’t do extra things because he also has to work. I am so tired I don’t trust myself with driving and staying awake….

    Doc: That is really serious and i think we should look further as to why you are so tired….

    At least the second scenario gives the doctor a better chance at helping address the problem.

    thanks for responding to my article, laura

  • fedupandconfused
    4 years ago

    Thanks for sharing Laura and everything you say makes total sense the irony is this illness often means we also have cog fog and going to the Dr’s or Neuro is stressful in itself especially with the additional walking and fatigue etc. So constantly finding the right words is a bit like the days you go for an interview and afterwards think “heck why didn’t I say this, or why didn’t I say that”. Due to cog fog I’ve written things down but the minute I get out my list I get that look of “have you been looking this up on the internet?” kind of look. So it seems we can’t win. I think the most frustrating thing about all of this is that those who can *show* they have MS due to their test results are a lucky bunch as no one doubts them, but those of us who have all the symptoms but don’t show all the answers are still viewed as suspicious and the stress of the constant questions and explanations all just adds up to not always having the strength to keep on proving yourself and lets face it, does it matter how many examples you give? It all boils down to the same thing and examples aren’t really necessary – if someone says they feel like *whatever* then maybe instead of asking for examples maybe the medical profession could use a scale of 1 to 10 so that anyone with cog fog doesn’t have to try find the right words or the right examples or right scenario’s. Instead maybe the medical professionals should give us a break and not keep stressing us out any more than is necessary with constantly trying to prove how you feel. I know you mean well and your article is great, I just get tired, no actually exhausted, by trying to prove my point. MRI’s, blood tests, Neuro, Dr’s, sleep tests, muscle tests, you name it we get tested for it and then to be asked time and time again to explain yourself is stressful. And then they wonder why we get depressed! All this causes fatigue and on a scale of 1 to 10 (10 being highest) – I’m at an 11. Sorry but I am exhausted. And I don’t happen to think explaining it is always necessary 🙁

  • Lisa
    4 years ago

    Thanks! You have stated much more clearly the thoughts my cog fogged brain was having.

  • Laura Kolaczkowski author
    4 years ago

    I envision the usual conversation being something like –

    doc: tell me what might be your worst symptom right now?
    patient: I am just so tired.
    doc: ok, let’s give you something for being tired/here’s some pills/get more sleep/etc

    OR if we are able to describe the tiredness it might be something like this –

    doc: tell me what might be your worst symptom right now?

    patient: I am so tired I am unable to pack the school lunches for my kids and my husband has to do all of the car pooling, which means lots of times the kids can’t do extra things because he also has to work. I am so tired I don’t trust myself with driving and staying awake….

    Doc: That is really serious and i think we should look further as to why you are so tired….

    At least the second scenario gives the doctor a better chance at helping address the problem.

    thanks for responding to my article, laura

  • mascha
    4 years ago

    Mmmmm yes you have a point here…..explaining over and over again and i have MRI images with evidence and yet a family member asked’sure its not something else.By the eay the reason we look so good is because most of us eat and live well for MS…..and imagine not many drink either lol.so we look good and it seems we are faking it all :/

  • Kim Dolce moderator
    4 years ago

    This is no small point that needed to be expressed, Laura, good for you for making it using good descriptive details for examples. Whether or not we like it, it is in our best interest to be much more specific in describing how we experience our symptoms. Words become cliches much more quickly in these days of social media where blurbs spread like wildfire and thus are subject to gross misinterpretation. This is the age of defining our terms. It’s exhausting but necessary.

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