Friday Thoughts: Invisible Disabilities Week

‘You look so well’

It’s a phrase I absolutely dread hearing.

The last time I remember hearing it was at my mum’s 60th birthday. Earlier in the day friends and neighbours may have spotted me leaving the house with my walker to get on the bus to pick up the last few supplies for the party after a tearful and stressed out morning. I’d been at Guide camp all week and I was sore and tired. I didn’t have the energy to curl my hair as I’d intended but I threw on a nice (but comfy) jumpsuit and popped on some red lippy. It was my Mum’s 60th, not a night I could really miss out on. But with my walking stick put away and makeup concealing my tired eyes, all of a sudden people see a different person. It’s almost as though, to others, my conditions disappear.

These days I decide honesty is my best policy and reply with ‘I wish I felt it’ and wait for the awkward silence that ensues.

Why can’t people just say ‘you look nice’? What does it have to do with how well I am? Am I not allowed to look nice and have a disability? Am I not allowed to get dressed up and still be in pain? Am I supposed to look unwell all of the time? What does unwell look like? What does a disability look like?

Pain is invisible. Fatigue is invisible. Headaches are invisible. Low blood pressure is invisible. High heart rates are invisible. Very few of the symptoms of my conditions are actual things you can see. But just because you can’t see a disability or condition it doesn’t make it any less real. Sometimes we can smile through the pain and push through the fatigue but it is always there.

Recently I’ve had a lot of comments telling me ‘You’ve Got This’ , and I know I do. I do not post these things for sympathy or encouragement, I post them to make my invisible more visible to those who may not see or understand. I spoke to someone recently who is having problems with pain and we agreed that you can’t mention it all the time because otherwise, we would never talk about anything else. But just because we aren’t talking about it, or we are in a good mood, or we are all dressed up, it doesn’t mean that it doesn’t exist.

I am often terrified to use my blue badge or a disabled toilet without my mobility aid, despite the fact these things help so much and I have full right to use these aids. I fear being tutted at or having a nasty note left on my car because I LOOK young and healthy. I am scared of being seen at the gym for fear that people will think I’m ‘faking it’, even though what they don’t see is the muscle pain I still have 3 or 4 days later.

We all know the phrase don’t judge a book by it’s cover.Β  Feel free to tell me I look great, but never tell me I look well.

Everyone is fighting a battle you know nothing about. Be Kind, Always.

Spoons & Love.

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2 Comments on “Friday Thoughts: Invisible Disabilities Week

  1. Jenni,
    Thank you for sharing I wholeheartedly agree with you. I did have a slightly different experience though, it did take a dear friend of mine to tell me, hun put on make-up because it’s something you’ve always enjoyed. So I actually started doing putting on makeup not a lot just a bit to make myself look less sickly. Which to be honest it did make me feel better on the inside.
    The pain and fatigue and the “MS package” as I call it is ever present. However, I did notice my son “alot younger at the time”, perked up and that lifted my spirit. However, it does not change the way people see this invisible disease. I use a cane due to my gait and a Walker on my weaker days. I love to laugh and use-to dance when I was younger. A few years ago at a concert I was holding onto a wall and my cane swaying and dancing to the performer’s song. My friend not intentionally, said hey you’re dancing, I thought you can’t do those type of things. I was a bit stunned, but said look I am holding on to the half wall and cane, I am alive and love music. That doesn’t mean my disease isn’t present.
    There are times I have to take a Sanctura tablet and Provigal just to be able to enjoy an outing. I have learned a lot of ways to live with my disease. It does get bothersome with the looks of others because I look pretty healthy. It clearly affects everyone differently. There are days my whole body hurts, it feels like I’ve worked out for far too long, then there are days, I cannot drive my vision and concentration are just not safe enough. It’s shocks me that sometimes it causes a slight issue at home. If I don’t feel safe on the road it should be believed period. I truly think it’s an invisible and misunderstood by those who don’t have it. They would sadly have to be in our bodies to experience it like in the Excedrin migraine commercial.

    Like

    • Thank you for your wonderful comment Eva and for sharing your thoughts on this. When I first got sick I did have people that told me to put on some makeup, when I really didn’t have the energy, and that used to make me feel like I HAD to wear it and I HAD to hide how sick I looked. Nowadays, I love make up – not only is it creative but it’s a relaxing self-care time for me. It does often make me feel much better but I want ‘normal’ people to understand that it doesn’t show how I’m feeling. The irony is that often when I look my best I feel my worst but as you say unless people can live inside our bodies they can’t seem to grasp that concept. Thank you again for sharing some of your story with us, I totally relate. Now I need to look up that commercial πŸ˜› Spoons & Love. x

      Like

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