invisible conditions Archives

Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Why I write…Tell us why you write about your health. How long have you been writing? What impact has it made on your life? Write for 15-20 minutes without stopping.

Why do I love to write about my health and my life with it? Well, for starters I would like to think that writing is something that I am good at; when living with a health condition, particularly one which is rare and unusual it is therefore only natural to want to raise awareness of the particular condition with which you have been diagnosed. For some people, raising awareness may involve organising events, or even speaking in public regarding their life and their condition. However, as I am an introvert and extremely shy, I therefore do not feel comfortable with public speaking and feel much more comfortable in expressing my thoughts and feeling on paper rather than speaking them out loud. Writing allows me to process my thoughts and feelings regarding my life and the condition that is a large part of it – writing is a very cathartic experience by writing down all my thoughts and feelings, especially the bad. Writing enables you to process your emotions, letting you to let off steam and providing a safe emotional release from the pain and anguish that often accompanies life with a chronic illness.

Another reason why I decided to start the blog and utilise social media as a part of documenting my journey with living with a neurological condition was to connect with others. For such a long time, I felt so lonely and felt as if I was the only person in the world experiencing what I was going through and therefore, I reached out to the health community in a bid to gain support that I could be provided with by the medical community. Friendship and knowledge from others experiencing chronic illness like myself was also something that I wanted to find through the health community as my world had gotten smaller, and as I am unable to get on my own, it is therefore difficult to meet others in real-life. Furthermore, I also thought that keeping a blog, would occupy my time and give me a project that would help with the boredom and monotony that comes with living with an illness and being stuck in the house for long periods as a result.

But, also I thought it would writing about my experiences with a chronic illness and disability, I could help and do my little bit to educate people on the issues that me and others in a similar situation face. For example, that not all disabilities are visible. I have heard great many stories of people with ‘invisible’ conditions having abuse thrown at them, for example when using disabled parking – even though they had the necessary permits and had a legitimate excuse for using the disabled parking spaces. This particular anecdote is extremely common amongst those with invisible disabilities, and have even experienced this myself, which I have written about in a past blog post (see ‘Becoming Visible in an Invisible World…’)

A fantastic benefit of using social media as a means of communicating about chronic illness

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 of 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’ it however does not mean to say they are – their disability or illness may be hidden underneath what we may be able to see. This reminds me of the many times when I have gone such as to the doctor’s for an appointment, where 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 looked perfectly healthy.

To conclude, writing and blogging about chronic illness provides an excellent means for an emotional release of the emotions that accompany life with a chronic illness, to connect with others who are living in a similar situation and to educate others’ on the issues that we often face because of chronic illness and disability.

Welcome to the third day in the WEGO Health Advocating for Another Blog Carnival. The prompt given was the following:

Leading a community isn’t all sunshine and ice cream – it’s hard. Write a post that delves into the 3 challenges that you face as a Health Activist

This is a really interesting post, one, which really makes us, reflects upon our role – probably not something that we really think about.

One challenge that I particularly face, especially when one considers it is a rare condition – is simply by trying to find an audience for my blog. Again, as I have previously mentioned it is not a common condition with very little information on the Internet or in medical books and have not yet met anyone exhibiting the same condition as myself. As a result, I often wonder if anyone reading my posts can relate to them or if they are relevant to other conditions.

Many of the symptoms are general, such as the dizziness and vertigo can be applicable to many different conditions, and the spastic paraparesis is itself a symptom and can be found in patients with multiple sclerosis and Parkinson’s Disease. But still the question remains whether my blog is helping and making a difference to others. Do I have something of value to add and share with whole health community?

The second challenge is being able to keep up with the writing and health activism whilst feeling so very unwell. A lot of the time, I really feel so unwell that the last activity that I feel able to take part in is by going on the internet, and writing or taking part in some other activist related activity. Us health activists need to attempt to learn to balance our lives – health activism is so important, it often gives us something to focus on besides our illness, and advocating for ourselves and others is an excellent approach to doing just that at, however, it is also important that we take time for ourselves and give ourselves a chance to recuperate when symptoms are bad and to rest as much as possible.

And the third challenge that I personally face, as a health activist is to effectively make people aware and to understand the challenges that patients with an invisible chronic condition face everyday, to let them know that although we make look well that it is not always the reality. And in addition to make others aware of the language that people often use around those with invisible chronic conditions – that they are not often useful or helpful and can be really hurtful. Some examples of things NOT to say to a person with an invisible chronic condition are:

“It’s probably just stress” – this undermines the severity of the symptoms being experienced; as if the person is exaggerating their symptoms as well as undermining the diagnosis given by a qualified medical practitioner

“It’s all in your head” – this can be really undermining and hurtful for someone with an invisible chronic condition; just because you are unable to see the problem does not mean that it doesn’t exist

“You’ve made it! You must be feeling better” – this fallacy is one that I get a lot and can be really infuriating. For my condition and many others there is no quick fix or even a cure and hearing tis proves that invisible chronic conditions are completely misunderstood and no effort is even being made to understand by others. For myself, I often try to make an effort to visit someone for their benefit as well as my own, often the worst thing to do is stay in and feel unwell and often like to leave the house to get fresh air and to have social contact with others

“Everyone experiences that” – I often get this directed towards the dizziness that I constantly suffers and feel that it often minimises the effects of the dizziness, yes, a lot of people experiences dizziness, but it many not be of the same severity that mine is, and often is not felt constantly as mine is

And there are many more!! Can you think of others that people say to you which are not helpful? Please share them with us and perhaps I can do a follow-up piece on the topic!

invisible conditions

WEGO Health Advocating for Another Carnival: Challenge Accepted!

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