WEGO Health: Myth Mugshot Photo Contest!!

Hey Everyone

Right for those who are on Facebook, I would really appreciate some help.  For May, the folks at WEGO Health are aiming to dispel common misconceptions and myths surrounding illness and disabilities.

One of the ways in which they are raising awareness of different health conditions and causes is to hold a ‘Myth Mugshot Photo Contest’ which gets patients, carers of health activists like myself to share something that is true and important to their particular condition or cause, and to upload a photograph of ourselves holding a piece of paper that tells the truth about the person’s particular health condition.

I ave decided to share the following:

Hidden Disabilities DO Exist

There are many people still out there who still believe that if a person does not look sick or disabled then there can’t be much wrong with them.  This of course is s a huge misconception as there a large number of health conditions which are hidden, and cannot tell by looking at someone that they have a particular health condition.  These include conditions such as depression, anxiety, diabetes, neurological conditions, those with brain injuries and the list goes on and on.

So please for those who are on Facebook please visit the WEGO Health Myth Mugshots Photo Contest Page (just click the link!) and ‘Like’ my photo (the 14th one on the page) of me holding a sheet which says my truth (“Hidden Disabilities DO Exist”)

Thank you

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…

HAWMC Day 4: I Write About My Health Because…

Hey Everyone,

I hope everyone is well today, I myself didn’t have a great night – legs were trembling really badly throughout the night which left me unable to sleep.  Anyway, today’s a brand new day – which means Day 4 of the WEGO Health Activist Writer’s Month Challenge, and today’s prompt says the following:

I write about my health because… Reflect on why you write about you health for 15-20 minutes without stopping

Okay, so why do I write about my health condition?  Well, my blog only started in January so I am still pretty new in the blogging community.

One of the main reasons why I started my blog as I wanted to educate people on my particular condition – long-standing brain stem lesion and spastic paraparesis.  I thought it was important to write about the condition as it seems to be very rare, and thought it may be of use to educate people on the condition.

I also thought it would be a good way to reach out to the ‘health community’ in order to gain support, friendship and knowledge from others that may be going through similar experiences.  In my life, I often feel lonely – being stuck in the house, especially when I’m on my own and thought starting a blog would be something that could occupy my time, giving me a ‘little project’ to help with the boredom and monotony in my life.

The idea of starting a blog was first suggested by a counsellor, writing a journal as a way of expressing my emotions and feelings, and the idea grew from there.  I decided to make my  journey public.

  I suppose I also want to educate people on disabilities – and that not all disabilities are visible, I have heard  great many stories of people with ‘invisible’ conditions having abuse thrown at them when using disabled parking – even though they had the necessary permits and had a legitimate excuse for using the disabled parking spaces.

Another story I read, concerned a gentleman who suffered with Ménière’s Disease, a vestibular condition which produces similar symptoms which I suffer from – dizziness, poor balance and co-ordination, and who was arrested for driving under the influence for alcohol after he was unable to walk in a straight line when asked to perform a sobriety test.  Therefore, it is important for those, like me suffering from a  chronic and life-long condition to stand up and speak out and to make people understand that just because a person may look fine and ‘normal’ does not mean to say they are – their disability or illness may be hidden underneath what we may be able to see.  Reminds me of the times of when I have gone out or mean to the doctor’s for an appointment, and I have had my crutch with me and having a few people stare at me, as if they were judging me and wondering why on earth I was using such an aid as I didn’t have a broken leg and I looked perfectly healthy.

 So, that’s my post for today, I hope you enjoyed reading.  Please leave a comment or message and let me know your thoughts or experiences.

Do you have your own blog or website?  What are the reasons for why you write?