An Open Letter to Anyone who has ever said ‘But you don’t look Sick?’

January 31, 2017 4:50 pm

To Anyone who has ever said (usually with a slightly confused sounding tone) ‘But you don’t look sick’?

You are right. Sometimes, I don’t look sick. In fact, sometimes I can look quite well. It even confuses me on the days when my face looks healthy as often it is so far removed from how I actually feel in my body.

What you don’t see, are the days and months where actually, I do look incredibly sick. Where there is no way to hide how unwell I feel and no amount of make up can cover up my glassy eyes and yellowy toned skin.

These words and the ones I am about to write to you, don’t come from a place of self pity, but from a place of reality. A reality, that actually, millions of people are living, most of them behind closed doors. Its something that I think needs to be spoken about more openly to raise awareness of a condition that is so misunderstood.

Think of pain. Any type of pain. You can’t visually see it can you? Sometimes you can see someone wince in pain, or see the pain etched on someones face, but usually, it’s hidden. If you have a headache, it’s not visible is it? Perhaps think of a time you have felt emotional pain. Maybe cast your mind back to a time when you felt deeply hurt, anxious or heartbroken, could people visibly see it? During those times when you had to put on a brave face and step outside the front door, was how you truly felt on show to anyone outside of yourself? Not really.

Many of us are conditioned to hide pain. To hide suffering.

One of the reasons we do this is perhaps that it feels safer somehow, to keep it close to our chests, to retreat, to only let those who are the closest to us enter into this darker side of our world. It is seen by many as a sign of weakness to show suffering, to show pain, to show fear, when in fact, it is part of being human. No one has a life purely filled with light, darkness is as much a part of it all. It just seems easier to only share the joy. The happy times. The success and achievements and milestones.

To keep ourselves safe and cocooned during tough times and put up a protective invisible guard around ourselves, can in someways, be a survival instinct to many of us. But it can also leave those of us with invisible illnesses open to so much misjudgement, misinterpretation and confused sideways glances due to so much of our reality remaining hidden.

Facebook feeds with smiley faces and snapshots of happy moments, when in fact these photos are only the tip of a mammoth iceberg, underneath which the struggle and larger part of our lives remains unseen.

It confuses people.

And understandably so. I would be confused if I was to glance over how my life may sometimes appear to an outsider or an acquaintance.

For months at a time, you won’t see me post on Facebook, and you won’t see me out and about, this is because during those times I’m housebound and encountering suffering on a level that I didn’t even know was possible until this illness came into my life. I embrace the better days, just as so many others in a similar position to me do, because I want to lead as much of a normal life as I possibly can. However, just because I look okay on those days, it doesn’t mean than I am.

Seeing me in a shop looking happy and well, could be a tiny percentage of that month. I will have had to rest before I left the house, and rest again when I get back home, but people don’t see that. More often than not, symptoms are hidden, and usually when I am out, I am enduring a fatigue so deep that its hard to begin to explain how this feels to someone who hasn’t experienced it. Make up works wonders and the happiness that comes alongside a day where I can get out and about, sometimes after long periods of time at home, is what you may misleadingly see through the sparkle in my eyes.

I hate the judgement and misunderstanding that can come alongside this.

When you are living with a chronic illness and glimpses of better days come along, you just want to try and enjoy what you can and distract your mind from what is going on inside your body. In an attempt to have some sort of normality on those days. Your pale face, is covered up. The spaced – out, exhausted feeling that never leaves you, is disguised through experienced practise, and the crushing feeling and urgency to go home and lay down, isn’t seen, because its not until the last minute when we excuse ourselves and leave the room, that this would even be visible to an outsiders eye.

The background feeling of uncertainty and distrust in your body due to the sheer amount of times it has crashed and relapsed and let you down over the years, is something people aren’t even aware of. The trepidation you can feel on a day to day basis, and the sense of vulnerability that comes from living in a world that often resembles a rollercoaster, as well as the isolation and the continuous wondering if life will ever be ‘normal’?

All hidden.

I have done so much work on letting go of what others think, but it doesn’t mean it still doesn’t get to me from time to time. It doesn’t mean I’m not aware that I often look perfectly fine. That my face very often does not actually match up with what is going on inside my body. I write this as much for anyone else in this position as much as I do for myself. People with invisible illnesses, whatever they are, deserve compassion and understanding, be it ME/CFS, Lyme, Depression, MS, early stages of Cancer (yep even Cancer can be invisible. My Dad passed away from Cancer last year, and it wasn’t until the very latter stages you would visibly know anything was wrong with him).

Bear in mind, that the days when we do look incredibly sick, and trust me there are plenty of those, are the days where we are at home. Sometimes for months or years at a time.

 

(A little side note – I’ll be honest with you here, I hesitated before putting these photos into the post. They have been in and out of it numerous times before I pressed publish.  It felt exposing and uncomfortable to share them. But then I thought, this is exactly what I am talking about! Hiding the bad days. The poorly days. The parts that at ‘unpretty’. Once I realised that, I knew they had to go in.)

On closing, one last thing I’d like to say, is that many illnesses, especially ME/CFS, can fluctuate massively. These fluctuations, sometimes happening on a day to day basis, sometimes over years, can be confusing. I had a period of time in my mid 20’s where I could work and lead a relatively normal life. Yet I spent the most part of 2010 – 2012 unable to leave my bed, tolerate external stimulus or care for myself.

My intention as I write this, is to just gently open the eyes of any of you who are a little confused by my face that sometimes looks quite well. To ask that if you know someone, who is suffering with an invisible illness, show them some love, some kindness and a little understanding. Don’t be so quick to judge. So often, people are fighting battles we know nothing about, and that goes for all of us, not just those who are chronically unwell.

A smile and a flick of mascara, on one of the better days, can cover up a whole world of hidden depths.

Emma x

This post also appeared in The Mighty – Feb 2017

 

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9 Comments

  • Susan Ashmore says:

    How I can empathise with allthis dear Emma! Bless you xxxx

  • Warren says:

    What can I say Emma? You are an outstanding writer, that blog was amazing. I can relate to every single word of that. But we somehow get through the darkest days because we know that there are also the brighter days! And those days are beautiful and so special to us…. We appreciate them more.

    • Emma says:

      Thanks so much Warren! Really appreciate your feedback. I agree very much with what you said, the ‘good days’ are really cherished aren’t they. I definitely appreciate the little things in a way I never used to before this experience.

  • rose says:

    Great article Emma, thank you for the care and energy you’ve put into it. I feel it would be incredibly helpful if it could be more widely read… beyond your blog, beyond the ME community, beyond facebook perhaps. Is that something you might consider?

    One thing that struck me in particular was your paragraph about the uncertainty and distrust we grow to feel in our bodies and the wider trepidation and sense of vulnerability that brings. I was probably never the most confident of people, but, pre-M.E., I did at least have some confidence in my body’s abilities, which fed back into my sense of myself generally. When that also went, my confidence overall took a big knock, and it’s taken me a long long time to start building that back up again and to trust any part of myself, including my ability to make decisions etc. Fluctuating energy and symptoms still means I can’t rely on my body though, such that all arrangements are provisional – not easy for the outside world to accept or deal with… nor even for my inner world, with its value system around being trustworthy, reliable etc.

    Anyway, thanks again.
    Rose x

    • Emma says:

      Hi Rose. I relate to your words very much. Its funny you should pick out that paragraph, as a close friend of mine (who also has long term ME/CFS) also said that one was the one that brought her to tears and had her nodding her head. I’m sure its true for so many of us. that our confidence is shaken. Living inside a body that fluctuates daily and can’t make plans etc and how that affects us, is something hard to convey to someone who is healthy and well.

      As for the article being read more widely, I hadn’t really considered it, I tend to just press publish and let it go where it needs to, but perhaps you have a point. It would be great if it could be read by a wider audience wouldn’t it? To raise awareness. I shall have a think about it and where I could possibly submit it to. Any ideas gratefully received!

      Love to you as always Rose,

      Emma x

  • Alice says:

    And still, you are beautifull! I see, feel and sense it between the lines; there is a beauty in you that doesn’t have to do anything with make-up, good days or bad days, internal pain or not….
    Thank you for this blog.
    I hope you are going to put the link in the Gupta-facebookgroups as well…

  • Emma says:

    Alice – what a beautiful, lovely thing to say. Thank you so much! You’ve really made me smile.

    And I hadn’t really thought of linking this in the Gupta groups. Mainly because its not necessarily recovery/gupta focused? But maybe i will now you’ve said that. They can always delete it if its not relevant can’t they.

    Emma x

  • Teresa says:

    That was so good to read. I love the way you write and express yourself. You are gifted with the written word and in being able to articulate the very subtleties of this illness. Like Rose and your good friend, I resonated with that line about vulnerability as well. Honestly, if one word could be used to describe what this illness is like for me, it would be vulnerable because you feel at the mercy of the wind. You can have a mild breeze or winds so strong they destroy you and you never really know which will show up at any given moment.

    When I read these open letters, they give me a sense of permission to feel the hard stuff when what I normally do is put it in a corner and try to gloss over it with my optimism. I don’t think it’s bad to be optimistic, I think it’s essential but it’s also important to acknowledge and feel the real stuff. The dark stuff. The ugly stuff.

    It’s been long enough now of me being housebound sick that my friends are shadows. I’ve kept it that way because I can no longer relate with them nor they to me. I don’t get people saying outright that i don’t look sick but I see it in some of their eyes and I refuse to defend my illness so I just don’t say anything. But what I wish my friends and family would say to me would be this….. “Teresa, I know I will never understand what you are going through every day but the fact that you get up, discipline yourself enough to stay in your wellness plan, keep your motivation strong, your belief strong, your spirits high, that you are capable of engaging with people when they come around and hearing about their lives, that you have grown so much as a person, is really remarkable.” Wouldn’t that be so much better than … “crickets…..” because that’s generally what I hear. People just don’t even ask about what’s going on anymore. It’s like i’m in a vacuum or something.

    Anyway, thank you as always for your beautiful words. They are always meaningful to me.

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