WEGO Health Advocating for Another Carnival: Wrap it Up!

Welcome to the final post of the WEGO Health ‘Advocating for Another’ Carnival!  Hope you have all enjoyed the posts of this special week-long blog carnival.  I welcome any comments that you may have and now you can also contact me via email, or even on Facebook, Twitter, Pinterest or even Google +

The last prompt of this carnival says:

Put a bow on our Advocating for Another week by sharing what you’ll plan to do going forward.  Free write or choose one of the bonus ideas…

So, what next?  Well, I am certainly going to continue with the blog – writing about life with this condition, problems and the truths behind living with an invisible illness and spreading awareness to others about the reality of invisible illnesses.  I am hoping to continue my work by blogging for the Invisible Illness Awareness Week.  And will take advantage of every opportunity to write that I can, from upcoming WEGO Health projects to the Invisible Illness Awareness Week – they all provide excellent opportunities to blog and spread awareness as well as providing brilliant inspiration on what to write.  The prompts and ideas often challenge us as writers’, often making us better storytellers and writers.

Will also continue using social media along with the blog – Facebook and Twitter to connect with others and hopefully making new friends along the way!

And in my private life, I am hoping that the group I am involved with will continue to grow and thrive, and am looking forward to the new opportunities that will present itself as secretary of the group – we already have so many great plans for the group.  Along with that I will also continue my work as a volunteer and now have been lined up as a potential tutor for courses as well as being asked to produce a newsletter for the Centre.

And all of this whilst trying hard to maintain my health and keeping as well as possible!


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…

The Debate of Invisible Illnesses….

I had an interesting conversation the other day regarding my diagnoses and the problems associated with ‘invisible illnesses’.  I remember the days before I received the definitive diagnosis and going from doctor to doctor, desperately trying to find an answer…and reading the body language and expressions, of doctors and of people I knew who clearly thought I was making up my symptoms and the problem instead “was all in my head.”

I am sure many of you reading this out there can relate to that, and unfortunately it is often the case that as soon as you are labelled by doctors as being a ‘hypochondriac’ or the problem caused by a psychiatric problem, it is extremely difficult to get them to take you seriously or even to look beyond that train of thought.  I know it is often the case for people living ‘Chronic Fatigue Syndrome’ (ME) to find a doctor willing to listen and to take their problems seriously, especially as there is still a lot of debate whether the condition even exists which must be so frustrating.

That is the problem with today’s society – just because a person does not look sick then they cannot possibly be ‘sick’ – whatever happened to the proverb “just because you cannot see something, it doesn’t mean it’s not there”.

Then we came to the discussion about whether my illness can be still considered invisible – considering, that when I am out and about I use a crutch and hanging onto one of my parents to stop me from falling.  Recently, I took a taxi, the driver of which I have not seen for some time, and he asked me what I had done to my leg.  Even, with the crutch, people may assume I may have hurt my leg in some way, and may not be permanent. And even when I do use my crutch, I do get the occasional stares, as if they are questioning why I need to use one.  As my legs are very stiff at times, it obviously makes walking difficult and often walk with some limp, or often will stumble or fall due to many different reasons – weakness in the legs, dizziness and my problems with balance.

Therefore, can be illness can still be described as being ‘invisible’ taking into account the crutch, and the other problems that I experience?

Please feel free to comment below on the post and any comments, share your experiences and what you feel about regarding ‘invisible illnesses’….