Invisible illness

The Invisibility of a Disease

When people talk about Multiple Sclerosis, they often talk about the difficulties of getting people to believe them or understand them when it comes to describing a certain symptom. Is this due to a lack of vocabulary or the fact that people can’t really understand something they have never experienced? I would say both; people will always try to compare anything you tell them to their own experiences, which is only natural. They may not be doing it on purpose because that’s just how our brains work. They key is for them to be able to say, “I can try to understand, but I don’t fully because I have never gone through it myself, but I will take your word for it”. The thing is, most people can’t do this; true empathy is not all that easy, even for myself; I have trouble doing this from time to time.

Everything is relative

I often talk about how everything is relative: pain, emotional difficulties, fatigue, stress, etc. What’s a “10” on your pain scale may only be an “8” on mine or vice versa. We have no way to really, truly, compare. Due to this realization, I try not to judge people when they say, “I stubbed my toe and am in the worst pain ever” because even though I know I have been through much worse, to them? Maybe that really is the worst pain they have ever experienced. You’re stressed out over a dental bill? I am certain I have more bills and debt than you, but there is also someone way worse off than me! So, I try to always keep that in mind.

Appreciating what I do have

No matter how bad you may feel in your life, there is always someone out there who would actually kill to have what you have. Because of this, I try really hard to always appreciate what I do have rather than focusing on what I don’t.

“You look fine”

OK, I am getting a bit off track from my point here: the invisibility of a disease. Now, this does not just apply to MS but many other things such as Rheumatoid Arthritis, Fibromyalgia, Depression, Arnold Chiari Malformation, Spinal Injuries, Dandy-Walker Syndrome, and the list goes on and on. Many people may LOOK “normal,” but you have no idea what is going on inside their bodies, inside their heads. Things like pain, fatigue, and cognitive dysfunction are often referred to as “invisible symptoms” in MS because if you were to break a leg, people can see that. If you have a limp or issues breathing? People can SEE that, and people believe what they see. When you’re experiencing some sort of “invisible symptom,” people can’t see it and often have a hard time believing in it. “Oh, you look fine, stop complaining”. Sadly, this happens most commonly among family and friends.

My experience with myoclonus

In my case, I can give you two examples: myoclonus and pain. I always look fine, but no one can see my insides jump around when a large box is dropped on the floor or a child screams. It makes me want to collapse and break down into tears of frustration. The sound of glass dishes clanking together still gets me; sometimes, it makes me wish I were deaf! Of course, I would never want to lose my ability to hear, but other than running away or constantly wearing earplugs, I am not sure what to do but endure.

Hiding my pain

Pain? I have learned to hide it really well. You will never know I am in pain unless I want you to know, or it’s so bad that I can no longer hide it. At work, I may be in so much pain that I want to go home right when my shift is over, but if someone asks me if I can take care of something before I leave? I am going to say yes because I don’t want people to think I am just making up excuses to get out of there because they can’t see if I am really in pain or just making it up. I don’t want anyone to ever think I am using my MS as an excuse.

The challenge of explaining MS symptoms

I wish there was a way to explain to people what certain symptoms are like besides building a great vocabulary and translating our feelings into something the average individual can understand. Most people (for example) describe fatigue as carrying an extra 100 pounds on their back all day. What I often say is that it feels like you have a really bad case of the flu and your body just wants to turn off. I try to find ways of allowing people to relate based on their personal experiences, but even still, they don’t always really get it as they have never experienced it themselves.

A day in my shoes

I would never wish any of this on anyone else, but sometimes, I do wish that someone could experience a day in my shoes, even an hour, just so they could understand.
All I can say to the loved ones of those suffering through any number of disease or injuries that cause invisible symptoms is that you may not really understand it, but you have to take their word for it, try to really understand what they are trying to tell you, no matter how crazy it may sound to you, or else it will cause much resentment in your relationship with that person. I have seen (and personally experienced) many friendships/relationships end because of a lack of understanding (or willing to try to understand). This is a huge issue and one that is unbelievably frustrating, even to myself because despite my decent vocabulary I can never seem to really translate how I feel into words. But seeing someone really try to understand? That makes me feel good.

We can’t just “push through” a lot of this stuff as many might say we should.

Who do you have trouble explaining symptoms to? Family? Friends? Work? Share below!

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 (6)
  • Catgirl66
    4 years ago

    Matt, I want to thank you for the excellent description of what myoclonus FEELS like. You see, my Mom died of a combination of lung cancer & a ruptured brain aneurysm approximately 10 years prior to my diagnosis, but I can remember, even as a little girl, how any loud, unexpected sound would distress her… and I use that word very mildly. It was not unusual as I got older for her to collapse in tears and beg whoever was responsible for causing the disruption to please just STOP. Unfortunately, we will never know if she had MS, but the more I learn about this disease the more it fits what I saw her live with all my life. Thanks again! Cathy

  • Matt Allen G author
    4 years ago

    Yes, DISTRESS is an UNDERSTATEMENT. I am glad you have found my writing useful in some way shape or form, take care!

  • fedupandconfused
    4 years ago

    Excellent post Matt you are absolutely correct how can we explain something we don’t even understand ourselves sometimes? Furthermore how can we expect others to understand us when we don’t even understand our own bodies? MS is a lousy excuse of a disease as symptoms can change daily, one day unable to walk yet the next being able to at least walk unaided. The pain never goes away either, it just stays there in the background grinding you down further, all it takes is a hot day and even getting up from a chair is almost impossible and the pain unbearable. How can people “get it” when like you say, even we don’t “get it” either?

    I took years for me personally to finally accept that there might be something wrong as I didn’t actually think any of the symptoms were connected and added to this they would come and then go as quickly as they arrived. Who reports “passing” symptoms anyway? And what have swollen hands, itchy skin, pins and needles, blurred double vision, constant flu like pain, trouble breathing and talking at times, fatigue, pins and needles and not being able to walk but yet not explain why – got in common? How would anyone in their right mind even begin to think all these dots would join together as one of the same thing?

    It can take years for these things to start to add up and coming to terms with your disability yourself is one of the hardest things to EVER do, especially if you are strong and independent and suddenly when you look back over a short period of years you have suddenly, silently, unexpectedly become disabled. You look back and realise the things you have done to help yourself; gadgets to help in the kitchen as you can no longer do certain things that were once easy, walking sticks for “off” days when for some reason you feel dizzy and uncoordinated, parking close to places as you can no longer walk far. You suddenly wake up and realise you have become disabled and wonder why no one else has noticed yet ironically you haven’t realised yourself how bad it has got either!

    So really it’s no wonder we can’t find the right words to explain it. We’ve lived with it and not understood it ourselves so how do we explain it to others? Sometimes it’s just easier NOT to explain it, besides who would understand anyway? And how many times do you go over and over and over the same thing without driving yourself crazy trying to understand a disease even science doesn’t fully understand?

    I have had trouble explaining it to all kinds of people be that family or friends and still not everyone knows as I don’t want the pity party and besides, sometimes you then put up to ridicule by people who don’t understand and who don’t get it or they are simply looking for reasons to explain why you have had to retract from “normal” everyday life. Comments like “have you nothing else better to do than sit in front of a computer all day” is a bit harsh when actually no, you don’t, as you are almost virtually house bound and your computer “IS” your life! It is your link to the outside world as you no longer have the ability to walk nor the money to live a normal life. Besides all of this in my case for two years whilst being diagnosed and being tested for every autoimmune disease under the sun and them all being ruled out , not only was I ostracized by the system as until fully diagnosed I couldn’t claim benefits, for some crazy reason some people believe that meant I must not be ill. The irony being that due to walking difficulties I was deemed as disabled and have been able to claim for a parking permit to use when on bad days I can hardly walk, yet I can’t claim a dollar in disability until the disease has been diagnosed. Which has just finally happened. So now two years down the line I can finally claim benefits and gain much needed help as we are almost bankrupt for the first time in our lives. All of this additional stigma and stress has meant I have “hidden” this disease for so long, it’s become a part of my life to manage it silently, to not explain nor whinge nor complain but just smile when asked how you are and say “yeh good thanks” when really you just feel like crying in a corner and not getting dressed some days.

    And then there is work; as a consultant the last thing anyone wants to do is employ someone with MS so on the one hand you don’t want a diagnosis as this will render you unemployable from a contractual perspective, yet ironically on the other hand you can’t work anyway as you can’t explain to a new client why you can’t walk in a straight line, why your voice is shaking with fatigue and you can’t talk properly or your legs won’t let you walk away from a meeting without collapsing or why you have to wear incontinence pads for fear of peeing yourself and getting up from a wet puddle on the chair. So again you say nothing, you keep quiet or make excuses up as to why you have decided to take time out until you get back into the market again. Which in reality doesn’t happen…so this becomes another thing to come to terms with. So how can you explain this to others when you can’t explain it to yourself? You hardly want to believe it yourself – so how can you expect others to believe it?

    So there it is….MS. I call it the Miserable Sod (MS) disease – it tries to stop me doing what I want and it takes away all the things I used to take for granted. But I REFUSE to let it make me miserable and to fade away from life. Instead I try to focus on the things I CAN do rather than what I can’t do. I now do things I never had the time to do before. The things that are free yet make me feel alive. For the first time in my life I am time rich and money poor. So instead of looking forward to holidays abroad or buying nice things, I now focus on finding great recipes on the internet and cooking inexpensive yet tasty meals for my husband and family and friends and taking my time in preparing meals and freezing them for a day we can all get together to enjoy a day of eating and drinking without the pressure of cooking that day i.e. planning ahead. My enjoyment is gained by looking at the birds that grace the beautiful island where I live or seeing the dolphins when traveling by ferry to the mainland. I now enjoy the free but much finer things in life; after years of working as a professional I have accepted my career is over, it no longer defines who I am and I have finally woke up and smelled the coffee.

    So explaining it no longer the most important thing anymore. In the words of Dr Seuss “those that mind don’t matter …….and those that matter don’t mind”

  • Matt Allen G author
    4 years ago

    That could have been an article on it’s own! haha, but yes, everything you said, so true. Funny you mentioned the parking issue, I often look at the people who cut people off in parking lots to grab a closer spot to the store and think “wow, you super healthy an physically fit and you can’t walk an extra 20 feet?” so instead of trying to get a super close spot I will take a spot in the back and walk the extra distance even if I feel weak because that’s just who I am. “You can’t do it and your clearly fine yet I am not fine but I WILL DO IT just to make a point to myself.”

    Personally I am very open to everyone about my MS, I just talk about it very briefly and nonchalant so no one give me that stupid pity party. Yeah, MS sucks, but it’s just life now, I can’t remember what it felt like to NOT feel this way. THIS is my new “normal” as so many say.

    By the way, I like that quote :p

  • Guitar-Grrrl
    4 years ago

    Lately, work has been crazy busy! I’ve regularly put in up to two hours of overtime, and I wind up using my days off (I work MWF) just to recuperate. I think my co-workers understand, but I’m not sure. Mine is a very physical job, and my usual afternoon fatigue just piles cog fog on top of everything.

  • Matt Allen G author
    4 years ago

    I definitely understand. I may not work as MUCH as you but 40 hours is still testing my limits as the effects on me seem to be the same as you describe. So when I have time off yeah, recuperate AND I try to write. DIFFICULT when you just want to drop into bed!

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