My Life…My Truth

You think that you know, but you have no idea what living with my condition is like.  People make snap judgements based upon many different factors such as appearance, body language, posture and so on.

So, I have decided to write a post regarding misconceptions regarding my condition and my life that people may have, inspired by WEGO Health’s ‘True Life Tuesday Blog Party’.

The first misconception has that as I appear ‘normal’, I cannot possibly be disabled.  However hidden disabilities do exist and exist in many different forms – such as mental illness, learning disabilities and many neurological conditions such as my own.  Hidden disabilities can create significant limitations for the person, the only difference is that we cannot see these limitations and barriers as we can with those who are blind in a wheelchair.  Take my case for example, the weakness in my legs are not visible to the outside world, but it does and affects me greatly such as not being able to stand for very long and experiencing many falls daily.

Image: BBC News

“Your dizziness is caused by anxiety; you just need to learn to relax” is one misconception that I have experienced by many people over the years – especially by doctors.  However, although anxiety does play a part as I often felt anxious about the dizziness, which only seemed to magnify the unpleasant symptom even more.  Although relaxation and breathing exercises did help with feeling calmer and less anxious, it did not help regarding the dizziness, and was still very much present in my daily life.  As anxiety and other psychological problems was not the root cause of the dizziness but instead a by-product of it.

“You are constantly falling over, you must be drunk” is another misconception that many people may think when seeing me, as I am often swaying or stumbling and falling over, many symptoms people exhibit when intoxicated.  However, with neurological disorders such as mine and many others, the unsteadiness and constant imbalance is caused by the lesions that exist within my brain stem – causing dizziness, problems with balance, and in my case stiffness and weakness in my legs.  The spastic paraparesis often causes great difficulty with walking, especially when they are weak, as they often just give way from under me with no warning causing falls.

“You don’t look sick, you must be feeling fine” is one which I am sure many people with hidden disabilities or invisible illnesses such as mine often experience in daily life.  People make judgements based solely on appearance – but just because someone may look fine doesn’t necessarily mean they feel good on the inside.  Due to the long-standing brain stem lesion, I experience constant dizziness with frequent episodes of vertigo and consequently often feel very unwell, but as a young woman, when going out I don’t want to look ill, so I use make-up to hide the dark circles under my eyes – to give me a natural healthy glow.

And  my last misconception is based upon glances I receive when I am out using my crutch.  These stares and looks seem to say “Why the hell are you using that crutch, you don’t seem to need it”.  Again, as I am not exhibiting a broken leg or some other sign of injury, I couldn’t possibly need to use an aid such as a crutch, to look at me I look perfectly  ‘normal’ and ‘healthy’ but hiding deep inside are lesions causing imbalance and weakness in legs and so on, often leading to stumbles and falls, and using a crutch makes me feel much more stable when walking.

So, these are the misconceptions regarding my health condition.  Try and imagine a person exhibiting some of the symptoms I experience, are these any other misconceptions or judgements that you might make regarding that person? Would love to hear your thoughts and suggestions…

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7 thoughts on “My Life…My Truth

  1. Although I am older than you, in the scheme of things I look “young” for someone with a cane. I see people scan me from head to toe looking for an obvious reason for the use of my cane. It has made me aware how people don’t even realize what they look like. It makes me wonder how many times I have done the same not aware of my reaction to people. I think we are all guilty to an extent. Having MS has made me more compassionate towards others.

  2. Hi Michele

    Tank you for your reply, yes I know exactly what you mean when you say people scan you from head to toe for a reason why you might need a cane, it happens to me a lot, quite recently too when I went to see my doctor, the oter patients staring at me and my crutch. I also agree that having a condition like this, can make you much more compassionate and considerate towards others, sometimes I find that I do judge people too quickly on little things and then have to stop myself and make me realise that I don’t know ‘their story;.

  3. Hi, I have Lupus… So I truly understand you, which is a shame, because we should never be looked like if we were “weirdos”.
    I got a 62% disability due to pain, exhaustion and so on, but I look just like a tired 32 year-old.
    The worst thing is that, even though I have my disability card always with me, I am afraid to show it in the tube or the bus!!! Just imagine you (as a healthy person) are sitting in the bus and then this young girl comes to you and say “would you mind standing up so that I can seat? This is a reserved seat, look at my disability card”…
    Can you imagine what I would get as a response? Don’t even want to think about it!!!
    Things like this should never happen…
    It’s a pitty, but we need to just don’t care about what others think about us…

    • Thank you for your commenting. I totally understand what you mean, it’s a pity people can be so judgemental, my Mum hates it when I get looks and just stares back at them. And it can be so embarassing when I am out in public and I have a fall – all the stares from other people. I know I should care less what others think of me, but can be very difficult as we all tend to seek social approve, that confirmation that we ‘fit’ in.

      I haven’t got a disability card yet, as over here in the UK you need to get high rate mobility – whereas I am only currently receive the lower rate, but I think I would be wary using it, as my condition and disability isn’t obvious, there have been many stories of people being shouted at and abused for using one to get a disability parking space, even though they had a legitimate excuse for doing so. It’s a shame many people here are abusing the system, claiming benefits and disability when there isn’t anything wrong with them which is adding to the stigma of disability, specifically hidden disabilities as it isn’t obvious…

  4. I really need the cane for balance support, but I have a bit of a leg swing in my gait. As someone in my 50s I get a lot of stories from strangers about how to recover from hip or knee replacement. I do have arthritis, but that is not the current issue. I almost never correct them, I just nod nicely. I think the invisible disabilites such as fatigue and memory issues take the biggest toll on me. People think I am lazy if they don’t know the whole story.

    • Thank you for the reply Linda, this is a really important to talk about and make people aware of these misconceptions of different health conditions and disabilities. I find as my condition seems to be rare, I find that I am constantly trying to explain my condition and how it affects me in certain situations – which can be very tiring!!

  5. Fantastic article, Rhiann. Strangers are always asking me “Are you ok?” I just smile and nod. Sometimes people insist on getting me a chair and making me sit down. I realize that they are probably just trying to be nice, but it can be quite embarrassing. I get asked all the time “Which leg (is your bad one)?” I get stared at, people make faces at me, as you said, scanning to see why I am walking with a cane. It gets tiring trying to explain dizziness to people that have no idea. And then there’s the people that think they know what you’re going through and insist on giving you their “cure-all” advice. No wonder many people with hidden disabilities chose to stay in the safety of their home, even when feeling well enough to go out for a change.

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