Body · MS Life

When Your Visible Illness is Also Pretty Invisible

It’s Invisible Illness Awareness Week!  Well, only just – it runs from the 15th to the 21st October 2017, so it’s ending today and I’ve almost left it too late to write anything.  I’m back at work now, so it is much, much harder to keep to writing a weekly blog post, which is what I strive for.

The past couple weeks have been full of work, taking the kids to their after school activities and… well, that’s it.  But that is enough.  I’m done in – and don’t I know it.  I have come down with a cough and ongoing headache and I’m back to falling asleep on the sofa as soon as the kids are in bed.  That’s work when you have Secondary Progressive MS for you.  But you know what?  One of the most frustrating things is that, on the outside, people see my dodgy leg and that’s it.  People at work say that I’m ‘looking good’, but they don’t see the light-reflecting concealer that I shove on under my eyes to hide the dark patches or the blush I use to try and hide my fatigued-pale skin.  I put 100% of energy into being a good therapist, doing my best job, that outsiders don’t realise everything that is happening that they can’t see.

quiet woman
Photo by Roberto Tumini on Unsplash
I guess this is where Invisible Illness Awareness Week comes in.  Yes, I use crutches, yes, I have a weird limp where my leg flings out and, yes, I have fallen and stumbled at work too many times for my liking.  But MS, like so may other chronic illnesses, is so much more than you can physically see:

  • Just because I look ok (i.e. vaguely pulled together!) and am smiling, doesn’t mean that I feel ok inside.  Mentally, I’m tired.  Physically, I’m at the stage of my MS that my body is constantly reminding me about it; tight, spastic limbs and feet, overwhelming feelings of fatigue and constant ‘buzzing’ sensations in my limbs (so hard to describe!).  Don’t get me wrong, I can still laugh and see the funny side to situations, I still enjoy life and being with family and friends, but all these physical feelings are happening at the same time and I can’t ignore them.  I fake being well with my visible illness.
  • Others might not understand my limitations, but I ask that they are accepted regardless.  I started blogging because it helps me to get my feelings out and I am aware that when I write about the symptoms of MS, how it affects me, I often am repeating myself!  But it is because I know that, no matter how close I am to somebody, unless they have MS or another chronic illness, they don’t fully ‘get it’.  I try to not constantly talk about it with loved ones, but I still need to have the opportunity to moan.  Writing is my moaning! And if people are sick of hearing me moan, believe me when say that I am so sick of living with the things that make me moan.  Others may be able to ‘switch off’ from hearing me complain, but I unfortunately can’t switch off my MS.  That’s why I ask that my MS is accepted as part of me.
  • Mobility issues and fatigue are my two biggest MS symptoms.  My mobility issues are obvious, as detailed above, but the fatigue may be less so.  My husband definitely sees when I can’t do anything except sit and rest, but a big part of it is also the effect it has on my mental functioning – difficulties concentrating, word finding problems, memory issues and low tolerance of busy, noisy places.  All of this is invisible when people look at me, but it is the reason why I am finding work so hard.  But how do you prove this?  Unfortunately for me, the after effects of work happen when I get home and on my days off, so family feel the brunt of it.
  • I’m not getting better.  This is not only hard for me to accept but also – maybe especially – for loved ones to accept.  Most people feel shitty when they have a flu or cold and I totally get that because I feel that too.  But I remember getting better from that cold or flu and being able to get on with my life, feeling clear headed and sprightly.  Sprightly is now not in my vocabulary.  I never really feel well and I miss it.  I imagine it’s hard for ‘well’ people to put themselves into my shoes.

***

Ultimately, I would never wish my mobility difficulties on anyone, but I guess that they act as a ‘red flag’, telling others that I’m not well.  Some people with MS and indeed other illnesses, however, deal with only invisible symptoms.  How frustrating would that be?  For people to just have to take your word that you are ill?  I hate that in this day and age people still say ‘well done’ to me at work because, ‘so many people get a diagnosis and just say they can’t work’.  If only people would understand that giving up work, for someone who considers it a massive part of their ‘self’, is the most difficult, heart-breaking decision to be made.  And that’s the big thing: understanding.  I hope that over time ‘Invisible Illness Awareness Week’ does help to raise awareness and therefore knowledge and understanding about things that people would otherwise not know about or consider.

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Photo by rawpixel.com on Unsplash
My number one piece of advice to those who have an invisible illness – even if other parts are visible, like mine – is to seek out a support group.  Whether that is locally or online, through Facebook or a chat forum, ‘meeting’ others who are going through the same things is invaluable.  I love the fact that I can have my moan and others ‘get it’ – it truly makes me feel less alone and more understood.  I’m hoping that the awareness hopefully raised through Invisible Illness Awareness Week is carried on through the year and that everybody reading has a fab rest of the weekend ๐Ÿ™‚

Jen 2

38 thoughts on “When Your Visible Illness is Also Pretty Invisible

    1. Thanks for your comment! Here in the U.K. The hardest thing is you need to be able to prove your hidden disability before the government supports you. It’s so hard when you can feel yourself getting worse but others can’t always visibly see it x

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  1. Fantastic post again. The hidden side of an invisible illness that only some see. It’s hard to tell others how you feel, because like you say they don’t “get it”, more awareness and acceptance a needed. Xxx

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  2. Once again Jen a super post. It really is one of the challenges of having an invisible illness. Unless you have one, you cannot understand what it is like. Your last paragraph about finding support is absolutely correct. That is our bedrock. Thank you.

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  3. Thank you Jen this was so beautifully written. I totally agree with everything you said. I too have tried many times to blog this but you said it a thousand times better.

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      1. I agree it does in some insane way help to know others are going through whatever we are. It is not with reason mean reasons, it is so you have a chance to get to know someone else that understands you. It kind of makes me not feel so darn lonely. xx

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  4. Great post Jen. You sum up so well what it’s like to live with an invisible illness. Like you, it’s only really my husband who “sees” how I really feel, and as you say others just have to take my word for it. Unless you’ve felt such symptoms they’re not easy to explain either. Thank you for raising awareness xx

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  5. As others have written above me, you wrote this so well! Working full time myself-I get it, and can mirror your days to mine – although I my kids are grown and have left the nest. Work or not to work! Is it a good stress or a bad stress? So many things to think about yet all we want to do is be able to do all the things everyone normally does and be happy ! New normal right?

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  6. Well written, and I say the same things about my legs – so hard to describe. Support is essential. Deciding not to work was not a choice for me, but accepting it has been beyond difficult. It is definitely a loss and carries so much stigma. A friend of mine says that the focus should be on self-preservation, and those words have helped me some. Sounds like you have many balls on the go right now. All the best to you.

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  7. Wow this is so amazing Jen! And like so many others said.. you nailed it!! Also.. moan here as much or as little as you like, we are all here to listen and support you! I understand the work side.. I went back 3 hours a day, then my doctor increased it to 5 hours a day then… Boom.. body just stops and another relapse appears. I’d really like/love to be a counsellor and help people, but I just can’t study and work full time.. so in a bit of a never ending MERI go round. Lol.. sending you big hugs xxx

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    1. Hi Hannah! Thank you for your comment. I’m so sorry to hear that the increase in hours has impacted on you so much, it just goes to show how little our bodies can handle. Training to be a counsellor would be amazing! I’m trying to do some work on the side to get myself trained to be a proofreader but I just haven’t got the energy at the minute so I’m worried I’m going to have wasted my cash on something that I’m not going to get done in time (everything needs to be finished for May). Big hugs to you too ๐Ÿค— xx

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      1. Hey (I thought I’d replied to this.. lol) but thank you for your comment.. yes it’s amazing really how our bodies react to things isn’t it? Ah yes maybe if I reduce my hours at work I could think about studying councelling… It’s a lot of money though and I need to really think about it first. Ah can you not ask for an extension due to MS? I hope you get it finished and I hope they’re easy on you xxx

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