ME / CFS: I am what invisible illness looks like.

24 May
I don't Look Sick

Invisible Illness. Photo Source: Chronically Creative

ME / CFS is often dubbed an invisible illness and I think it is a very apt description.

The recent flurry of activity for International ME / CFS Awareness Day on May 12th 2013 (read more about that here) was all about raising awareness of this illness and making the invisible visible, if only for a day.

This got me thinking. How and why is ME / CFS an invisible illness? The answer might seem obvious and simple – there are few, if any, external visible symptoms. But it’s not that simple. I think there are many ways in which ME / CFS is invisible.

I'm hurting on the inside = invisible illness

Image credit: Yahoo Image Search.

Here are just some of those ways which are personal for me:

  • Much of what I go through on a daily basis is not seen by even my closest friends. After I published my recent post listing some of the ways ME / CFS impacts me (e.g. not being able to dry my own hair for it making my arms ache too much), a close friend said to me that she’d had no idea up until reading that post just how hard it must. I was so touched by my friend’s words. It made me realize just how invisible this illness is. Only Mr B, my parents and my sister really see what this illness is like, as they are the ones who see me on a daily basis.
  • There are very few, if any, obvious visible physical external symptoms to ME / CFS. My mum sometimes comments that I’m looking very pale or that I look even more tired than usual, but to the lesser discerning eye, on the outside I look well and people often comment that I do look well.
  • ME / CFS is classified as a neurological illness by the WHO. It is a disease that affects many of the body’s systems and functions: hormonal, nervous, endocrine, gastrointestinal, temperature control to name just some. But we do not grow two heads (!), the symptoms are internal. When I have a night sweat, an awful headache, start to ‘wilt’ from fatigue, ache and have body pain, I’m the only one who knows this. There are no really clear obvious signs on the outside.
  • A diagnosis of ME / CFS is a diagnosis of exclusion. It doesn’t show up in a blood test in its own right. You are tested for everything under the sun (glandular fever, leukemia, tumours, thyroid dysfunction, celiac etc etc) and when these tests are clear, you are diagnosed with this lurking invisible illness of ME / CFS.
  • Those of us with ME / CFS spend the majority of our time inside our homes. Aside from those who live with us, we are not regularly seen by others, not even by our closest friends. We just don’t have the energy to socialize very often. When I have a visit from a good friend, the visit is kept under a couple of hours so that I do not ‘do too much’ and crash too greatly with fatigue and pain. This management of my illness is vital to keep my symptoms in check but also means that even my closest friends do not see what this illness does to me.
  • On the occasions when I do do too much, or even after a paced and managed outing or visit, I suffer from post-exertion malaise (i.e. a spike in symptoms from having done ‘something’) and I will need to spend a few days taking it really easy, letting my body recover from the increased energy used in the outing or visit, however small the energy exertion might have seemed to others. This of course means more time at home, without contact and interaction with many others, again making this illness invisible.
  • I need to have done very little during the day or so prior to a visit or an outing. Spreading out activities in this way helps keep my symptoms in check. But it means ‘doing anything’ more than my normal routine is restricted. Again this self management is not seen by many, keeps me at home and my illness largely invisible.
  • More and more it seems that when I mention to someone new that I have ME / CFS, they respond with ‘my Aunt has that’ or ‘a friend of a friend’ has that. Awareness and knowledge of ME / CFS is growing. But there are still far too many blank stares and ‘what’s that?’ when ME / CFS is mentioned. With this comes misunderstanding or downright ignorance. When Mr B and I were filling out life insurance and critical illness questionnaires for our mortgage, I had to declare my ME / CFS. Our mortgage broker said ‘oh that’s that yuppie flu’ isn’t it. I could have hit her (if I’d had more energy)!! This left me and my illness feeling totally misunderstood, misaligned and invisible.
  • As an ME / CFS sufferer I know I’ve added to the invisibility of my illness. Four months after my initial collapse with suspected ME / CFS, I attempted a return to work on a (very) part time basis (this was a stupid decision and only served to make my symptoms much worse). I didn’t want people to know that I had (suspected at that stage) ME / CFS. I wasn’t comfortable with that label. Everyone’s heard the negative press and stigma that is sometimes associated with this illness. I guess I was ashamed and embarrassed that I had ME / CFS. But by not talking about it I did nothing to help lift this illness from its invisible doldrums.  (That was over two years ago, I am fully comfortable with talking about my ME / CFS now).
I look like invisible illness.

Image credit: unknown source via Pinterest.

In addition to all of the personal ways I find ME / CFS to be invisible, this illness is largely invisible in the public sphere as well:

  • There is very little money and time given for medical research into the causes and possible cures of ME / CFS. Thankfully ME / CFS is not fatal. It is also not a glamorous illness given the stigma and negative connotations the illness (wrongly) gets sometimes. It is a chronic illness with no apparent leads in sight for cures. For all of these reasons and more, the large pharmaceutical companies, that fund so much medical research, and lobby politically for research and funding grants, are not attracted to chronic illnesses such as ME / CFS. 
  • ME / CFS seems to get side lined in the medical training of doctors and nurses which only leads to it remaining misunderstood and invisible in the eyes of many of the medical profession.
  • There is very little media coverage, positive or otherwise, of ME / CFS which simply compounds misunderstanding, ignorance and the invisible nature of chronic illnesses such as ME / CFS.

This has been a whirlwind tour of some of the ways ME / CFS appears to me to be an invisible illness.  It’s not exhaustive by any means.

Can you think of any more ways in which ME / CFS (and other chronic illnesses) are invisible? Let me know!

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26 Responses to “ME / CFS: I am what invisible illness looks like.”

  1. starrystez May 24, 2013 at 12:53 pm #

    You have described what my life is like to a T, right down to keeping visits to under 2 hours. Thanks for sharing. The invisibility makes it very hard to live with.

    • myjourneythrume May 24, 2013 at 1:26 pm #

      It certainly doesn’t make it any easier does it. Thanks for reading and commenting.

  2. Miss P May 24, 2013 at 3:13 pm #

    You have described my world too, including not being able to dry my hair.
    I really feel for all of the people who have ME when ME is ‘invisible’ even to them. My GP insisted for years I was just stressed when actually I had ME. My Mum was told she was depressed until they eventually diagnosed Lupus.
    Great blog =)

    • myjourneythrume May 24, 2013 at 3:24 pm #

      That’s such a good point. I was only diagnosed at age 26 even though I’d had ME symptoms since I was a teenager. GP after GP overlooked it and because of that my ME was invisible even to me. I hadn’t thought of that until you mentioned it!

    • Suzi May 30, 2013 at 12:24 pm #

      I have a convector heater which hot air comes out the top…I sit with my back to it & fluff my hair to dry it…hope this may be helpful for others 🙂

      • myjourneythrume May 30, 2013 at 12:36 pm #

        That’s such a good idea! I have a convector heater, but never thought of that, I’m definitely going to try it. Thank you Suzi for commenting and for following.

    • Sarah September 13, 2015 at 7:18 am #

      Im just like this !! Especially with the hair dryer. I can’t hold it for long. Even passing my partner the laptop from the side of the couch is a struggle because it seems hard to lift. I started with ME/CFS after I had glandular fever 😦

      • myjourneythrume September 16, 2015 at 10:32 am #

        So sorry to hear you’re suffering Sarah. I use a little travel hair dryer now as it’s so much lighter to hold than a normal one.

  3. Lindsay May 24, 2013 at 3:17 pm #

    Great post. I also feel that is is invisible because often in the beginning doctors make excuses for what is wrong with us – its in our heads, we’re just lazy, etc, making us feel invisible.

    • myjourneythrume May 24, 2013 at 3:27 pm #

      That’s so true. Some doctors seem to prefer any other ‘excuse’ they can think of to explain the symptoms of ME / CFS don’t they? It’s really bad when that happens and you’re so right, it just adds to the feeling of being invisible.

  4. fairywonderdust May 24, 2013 at 6:23 pm #

    Really well written, it brings home the point of what a serious condition it is. I have ME too, I think the problem is that its an umbrella term so the symptoms are actually the result of a number of different illnesses that have gone undetected. Have you looked into your diet? I suspect it might actually be auto-immune because whenever I omit wheat, gluten, dairy, soya, yeast and sugar (including natural foods such as veggies) then my symptoms disappear (the only other reason they show up is stress or insomnia). Ive given this advice to a number of ME sufferers and they have all see results too, so worth looking into if you havent. Its true there is more understanding among the general public now. I think more than 250,000 people in the UK have it. Everyone I know knows a few people who have it, so I think its more widespread than is known. I would say before diagnosis I got the whole ‘youre just depressed/its in your head’ thing but since diagnosis doctors have been much more respectful of the seriousness of what I am going through. Have you heard of Dr Myhill? If not, look her up on Google. She is a ME specialist in the UK who left the NHS because their guidelines were too restrictive to adequately treat ME patients. She has openly said there are tests that can prove ME now (technically they prove mitochondrial, adrenal etc fatigue) and my own specialist told me there are trials going on atm to prove the condition, so research is definitely making progress.

    • myjourneythrume May 25, 2013 at 12:27 pm #

      I just typed my reply and now it seems to have disappeared! So here goes again… Thank you for reading and commenting. It’s really good to hear that your symptoms are under control. I follow a similar diet to the one you describe. Diet is big part of it for me, as it sounds that it is for you too. I agree that there are more and more doctors that are good where ME is concerned, things have improved loads. But still not fully visible!

  5. Hayley-Eszti May 26, 2013 at 1:51 pm #

    Hi, I found your blog through twitter and I am so glad I did! As a fellow M.E’er I completely understand all of the points you have made. I sometimes wish that there was a sign I was sick, that way people mighy actually take it seriously! If I was to get on a bus, and needed a seat but they were all in use, how do I get around that? I can’t stand there and say ‘excuse me may I have your seat I am not well’ because nobody would believe me! Having an invisible illness is hard, if people can’t see it they can’t begin to try to understand it or even see it as being real. A great post, I’m following now 🙂
    Take care, Hayley-Eszti

    http://www.hayleyeszti.blogspot.co.uk

    • myjourneythrume May 26, 2013 at 8:59 pm #

      I’m glad you found me, now I can follow you too 🙂 thank you for commenting, and following. I know exactly what you mean about the bus. I was on a crowded train with my mum once and a young guy offered her his seat. She accepted so I could sit down. I felt like everyone must be thinking ‘how rude that young girl making her mum stand’…I guess you need a
      thick skin to survive an invisible illness.

  6. Nathalie May May 27, 2013 at 2:50 pm #

    Very very well said! The invisible part is so difficult. I am so tired of the ” you don’t look sick” line sometimes I could scream! I’ve been sick for 3.5 years and had to use a wheelchair after 10 months. When I have to travel outside Canada to get medical help, I always get the same treatment at airports. I get asked “0k what did ya do?? Or “partied to much”?? Lol I have been mostly bed ridden for the last 2.5 years and have just started to feel well enough to go on short outings. I was at a craft store with my family yesterday, the cashier right away asked me what happened to me ” did I have some kind of adventure and got hurt?, I said no and that it was a long story. She wouldn’t drop the subject, then leaned right over the counter and asked ” is it arthritis”?? I couldn’t believe the nerve! I finally said I had a chronic illness. I am seriously thinking of getting a huge fake cast to wear or my leg so I don’t have to deal with idiots! Lol

    • myjourneythrume May 28, 2013 at 9:59 am #

      Lol! Thanks so much reading and commenting. You made me laugh – I love the idea of a fake cast, I may try that one! I use a wheelchair too and also don’t like the idiotic looks and questions. If I hear “but you don’t look sick” one more time somebody may get hurt! That, and the way people suddenly talk to you in a different way “are you alright?” said in a reeeeeeally s…l…o…w, soft voice as if I won’t understand, really annoy me. Just because I’m in a wheelchair doesn’t mean I need patronizing or talking to me like I’m 3 or stupid or something!! Sorry, rant over. Fake casts or large neon signs are definitely the way forward I think! It’s really nice to hear that you’re starting to be well enough for short outings again, that must be a real boost. Just don’t leave the house without that cast!

  7. ME/CFS Self-help Guru May 28, 2013 at 8:34 pm #

    really well written! Well done! I relate to all of it.

  8. abigail.cashelle June 1, 2013 at 2:27 pm #

    LOVE IT!!! I found your blog through Lydia’s link, and I have to say that I agree 100% with everything that you’ve written here.

    I hate it when people tell me that I’m looking so much better. First, I want to say, Are you trying to say that I looked like the walking dead before? Second, !?#%. Third, Looks aren’t everything, you know. Fourth, it’s the makeup. The makeup comment tends to work actually; I can accept that I actually look nice (yay!!) but it also reminds people that it’s a facade.

    Does ME/CFS mess with your mind? Does that come and go? Because right now, I can’t imagine having the brain power to write a post like this!!!!

    Abigail

    • myjourneythrume June 1, 2013 at 3:46 pm #

      Thanks so much for your lovely comment Abigail!

      I totally agree about the make up. i stopped wearing it for a while when i got so fed up with the ‘buy you look well’ comments.

      ME definitely messes with my mind, take a look at some of my other posts (especially today’s) and you’ll see what dribble sometimes comes out of my brain!!! The brain fog of ME is horrible isn’t it?

      Thanks so much for reading and following.

  9. things that give me a headache June 10, 2013 at 7:51 pm #

    I hear ya about the hair drying! When my fatigue was really bad, I would cry at the thought of taking a shower. Fortunately, my fatigue is a little better currently, but I always have to make sure I’m not overdoing it when feeling well because then it’ll send me right back down. It is so true that people can’t understand what they can’t see. I recently had surgery for an unrelated issue, and everyone was very concerned for me. I had to wonder where all the concern was these 18 years I’ve been dealing with Lyme Disease. But since they can’t see the pain, fatigue and brain fog it is harder for them to understand.

    • myjourneythrume June 11, 2013 at 9:59 am #

      Thank you for reading and commenting. Pleased to hear you’re fatigue is easier at the moment. It’s always such a balancing act isn’t not doing too much. It’s really frustrating! Sometimes I think I should go out with a big cast on my leg and that way people would understand!

  10. Ami Hallgarth June 18, 2013 at 2:55 pm #

    Hi – I enjoyed reading your post and think it’s very well written…it’s never good to hear of other people’s suffering but it does help to be reminded I’m not the only one going through this…I have had M.E for 2 years and recently have reached an all-time low. It really is an invisible illness and at times I feel as if I’m invisible too and have lost sense of my own identity and sense of worth, due to my physical decline.
    I sometimes feel as if I’m the only one experiencing these symptoms and feel resentment that even my closest friends dont have a clue what I’m going through. I find it’s difficult to let friends know the extremity of the illness without feeling as if thats all I ever talk about or feeling as if I’m looking for sympathy all the time. On the occasions you do see friends, sometimes you just want a break from being ill and to talk about things other than illness, so I appreciate that its difficult for other people to get their heads around too.

    PS I totally know what you mean about the hairdryer! I used to be very image conscious and make an effort to shower, wash, dry and straighten my hair every day, but I’m relaxing into a more ‘laid-back’ look these days (i.e. living in pyjamas…)!
    All the best
    Ami

    • myjourneythrume June 18, 2013 at 3:07 pm #

      Ami, hi, I’m so sorry to hear you’re ill and having a particularly hard time at the moment. I know exactly what you mean about it helping to find others in the same situation.That is one thing I have really benefited from by writing this blog, connecting with others who just understand, no explanation needed, which sometimes you do need. I relate to what you say about losing your identity and sense of worth too. When I had to stop working because of my illness I felt exactly that and for a long time really struggled with it. I find having a daily routine to follow and something creative (this blog for me but anything you enjoy would work) that I can feel a sense of achievement for each day has really helped me. I’m pleased to hear you’re relaxing and have a more laid back look, me too! Joggers and crazy frizzy hair is my standard look these day! I think that is good for our health 🙂 Thank you for reading and commenting, come back again soon 🙂 take care, Jess.

Trackbacks/Pingbacks

  1. Saturday Summary | a Path Through the Valley - June 1, 2013

    […] I am what invisible illness looks like (Jess B, My Journey Thru M.E.) https://myjourneythrume.wordpress.com/2013/05/24/me-cfs-i-am-what-invisible-illness-looks-like/ The many ways in which ME is an invisible […]

  2. Why is there an Invisible Illness Awareness Week? - MCS Gal - September 12, 2014

    […] ME / CFS: I am what invisible illness looks like. (myjourneythrume.wordpress.com) […]

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