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National Invisible Chronic Illness Awareness Week

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Becoming Visible in an Invisible World…

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Last week (9-15th September 2013) was National Invisible Chronic Illness Awareness Week.  The idea behind this particular Awareness Week is to raise awareness of invisible chronic illnesses (which there are many!) as well as providing support to those suffering from such conditions, who may feel misunderstood by others, who often disbelieve their illness because they ‘look so good’.

What does a person with an invisible chronic illness look like?  The truth is, they look just like you or me.  Look at the person sitting next to you.  That person although may look healthy and normal , but their body may be hiding a secret.  That person could be battling a hidden illness such as fibromyalgia, ME, lupus, or MS.  They may look perfectly fine, but they may be in excruciating pain, dizzy or suffering from fatigue or other such symptoms often associated with invisible chronic conditions.

The symptoms associated with my condition such as the constant dizziness, bouts of vertigo, the trembling, stiffness and weakness in my legs are all invisible to the outside world.  No one other than me feels the trembling sensations or can feel the world spinning.  To look at me, I look normal, healthy.  Going out the only clue would be the crutch I use; but often people assume it’s used because of a temporary injury.  Often when I bump into someone I knew either from school or University days, or just a person whom I haven’t seen for a while asks “Oh, what have you done to your leg?” assuming the crutch is temporary and not because I am suffering from a permanent disability.

Nowadays, however the somewhat invisibility of my condition has become much more visible.  Because of the severity of the trembling in my legs, and the fatigue that has become so much worse, I now have to use my wheelchair much more regularly.  On the days where I am out with my carer, I am in my wheelchair more than I am out of it, to avoid falls and because the stiffness and trembling in my legs makes it so difficult to walk far.  It’s still true that the dizziness is bad that being in the wheelchair is difficult for me, but as the falls are much more regular and the trembling is so severe that now I have learnt I have little choice but to use the wheelchair.

 

Me out and about in my wheelchair
Me out and about in my wheelchair

 

 

Last week, whilst out with my carer, we went to our regular coffee shop for our favourite hot drink, is when I overheard a conversation between a middle-aged couple about me.  “I saw her walk a few steps before getting in the wheelchair, so she can’t really need it; she must be faking”.  This unfortunately isn’t a rare statement against those with invisible chronic illnesses who occasionally need to use a wheelchair or other assistive devices.  Those who are healthy can’t seem to fathom that a person can fluctuate between needing to use a wheelchair, or other assistive devices such as a crutch and feeling well enough to being without such assistive aids.

It raises interesting questions whether such awareness weeks and events are working and are successful in raising awareness of invisible chronic illnesses when there are still such prejudice and discrimination against those battling with such conditions.   How can we raise awareness within the wider community and population about chronic invisible illnesses and disabilities and the impact they can have on those living with them.  How can we teach others that wheelchairs are needed for not just those who are paralysed or missing limbs; that wheelchairs are not always a permanent fixture in someone’s life but can be used for certain situations or when a person experiences a flare in symptoms; a common feature with invisible chronic conditions.

During the National Invisible Chronic Awareness Week, people blogged, tweeted and shared information and took part in discussions on Facebook to raise awareness and connect with others facing similar situations but it seems that we have more work to do in educating the public, to help the end the prejudice and discrimination when those with invisible illnesses when using assistive devices as well as using disability badges…

 

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My Inspiration…

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Over at WEGO Health this month is ‘Health Activist Inspiration Month’.  The purpose of this month is to celebrate what drives health activists to empower themselves and others as well as the inspiration behind what makes them carry on the important work.  As part of the celebrations, I have decided to share the inspiration behind the blog and what inspires me personally.

My inspiration comes from the loneliness and isolation that I felt after my diagnosis of a long-standing brain stem lesion and spastic paraparesis.  Like most other people, I turned to the internet – searching various search engines for any information about the condition, and organisations or blogs where I could connect with others exhibiting the same condition.  Imagine my disappointment when I found that there was no such information or support networks out there, adding to the loneliness and isolation I already felt after a long battle with trying to get diagnosed, as well as how different I felt from others my age due to the symptoms I was experiencing.

After inspiration from a close friend and fellow blogger, I decided to start my own blog and so it was born in January 2012 so that no one else who may in the future be diagnosed with the same condition will go through what I did – feeling as if they were the only one going through this and that no one else understands what it is like!!

I have now begun supporting the ‘Invisible Illness Awareness Week Project’ and the inspiration behind supporting the cause as my neurological condition qualifies as an invisible illness – by looking at me you would never though that there was anything wrong.  But that isn’t the case as my days are filled with constant dizziness, frequent attacks of vertigo and visual disturbances, as well as the stiffness and weakness in the lower extremities.  Many people underestimate the effects of invisible illness or dismiss them entirely, claiming that the person is lazy or “that it’s all in their head” and so on.

It is due to these common misconceptions that inspired me to write about my life and journey with this condition – as many doctors for years blamed my symptoms on anxiety.  In want to be able to express the truth about invisible illnesses as well as dispelling those myths that many people hold.

And now I find that although non-one else I have ‘met’ has the same condition or disability that I have, nevertheless I have come across many other patients and bloggers out there that I have been able to connect with and gain understanding and friendship.  And the inspiration that keeps me going?  Receiving messages of support during a bad day can mean the world…

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Images of Hope for Invisible Illness Awareness Week

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As you may already be aware September 10 – September 16 is ‘Invisible Illness Awareness Week’ and as part of this fantastic campaign they are asking for people battling chronic invisible illness to share pictures that brings hope.  This can be anything from a photograph depicting a favourite place, a pet, flowers…anything which provides hope!  So, as I have been unwell lately and have not been able to participate in the Weekly Photo Challenge, I thought I would share some pictures that bring me hope!

My beautiful dog Honey who provides comfort, laughs, cuddles and kisses during times of illness and being bed-ridden!

 

This is a picture of Honey on ‘Rhiann Watch’ on a day in which I was in bed due to severe dizziness and incredible weakness in my legs. Was home alone so Honey saw it has her duty to keep me company and make sure all is well!

 

I love sunflowers, all flowers really! They are really pretty to look at – and sunflowers especially. At a recent ‘Life 4 Living’ group session we were asked to visualise sunflowers as part of a stress relieving exercise – which really does work!

 

And for all of you who know me – know that I really love butterflies!! I find them really inspiring for all that they represent and stand for. They are the epitome of change and growth

To see more images of hope you can view them here

 

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Did you Know?…

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Did you know that September 10-16 is ‘National Invisible Chronic Illness Awareness Week’?  Well, it’s based more in America, but still there are plenty of ways that people living in other parts of the world can participate – there are even going to be online virtual conferences to learn more about invisible chronic illness and connect with others.  To learn more about ‘National Invisible Chronic Illness Awareness Week’, you can visit the website at:

National Invisible Chronic Illness Awareness Week Homepage 

As part of the Awareness Event, those running the event have shared ’30 Things’ Meme to share with others what it is like living with an invisible chronic illness – especially as many often exclaim “Nobody understands me!”  This therefore, is an excellent opportunity to educate others so that people will learn to understand!

THINGS YOU MAY NOT KNOW ABOUT MY CHRONIC ILLNESS 

So here is my ’30 Things about my Chronic Illness’…

1. The illness I live with is…  Long-Standing Brain Stem Lesion and Spastic Paraparesis

2. I was diagnosed with it in the year… 2010

3. But I had symptoms since… The stiffness in my legs I have experienced since I was born although due to no diagnosis and no awareness that there was something wrong always thought it was normal!!  The dizziness and vertigo began around the age of 8

4. Te biggest adjustment I’ve had to make is… Learning to pace myself, take regular breaks to sit down so that my legs do not give way.  For example, do chores in small chunks whereas I preferred to complete them all in one go before my symptoms became worse

5. Most people assume… That because I look ‘normal’ that I must be healthy, whereas the reality is that I often feel extremely unwell, the dizziness being constant and often feeling incredibly nauseous and weak

6. The hardest parts about mornings are: The incredible weakness and fatigue that I feel, sometimes it feels as though I haven’t had any sleep at all

7. My favourite medical TV show is… It has to be ‘Grey’s Anatomy’ – would be much more fun attending hospital appointments if all doctors were as good-looking as they are at Seattle Grace Mercy West!

8. A gadget I couldn’t live without is… Has to be between my iPhone or the Life Line alarm I have had installed – due to the weakness in my legs it means they often give way and so have a significant number of falls and so with these gadgets it means that I can easily reach somebody to help me.  The iPhone also helps me keep connected with others when I am too unwell to get out of bed to go on the computer

9. The hardest parts about nights are: When the dizziness is so bad that I cannot get to sleep, sometimes it has been so bad that I have had nights where I have had no sleep at all

10. Each day I take __ pills and vitamins… Every day I take 5 pills (sometimes more when the vertigo is severe I took one to help stop it and ward off nausea)

11. Regarding alternative treatments I… Do not use any, as in my case the condition is not treatable even with conventional medical treatments, only can attempt to control the symptoms

12. If I had to choose between an invisible illness or a visible illness, I would choose… An invisible illness could be more positive in the way that people are more likely to treat you as everyone else

13. Regarding work and career… I would love to have a career and full-time job but often worry if anyone would hire me due to the amount of time that I am unwell and also would question if I could hold down a job due to my legs giving way a lot and the inability to stand for long.  Am also not allowed to drive due to the severity of the dizziness and vertigo, and public transport is not an option as it requires standing for a significant period of time

14. People would be surprised to know… Despite all my problems I still like to give back to the community and volunteer my time at a local mental health resource centre, which allows me to help out in any way that I am able.  It’s much flexible than a paid job, as if I am really unwell there is no pressure on me to attend

15. The hardest thing to accept about my new reality has been… I am not like everyone else my age and cannot achieve the milestones that I was once looking forward to, passing my driving test being one.  Another example, is going out at night with friends, which I am unable to do due to the weakness in my legs, as well as the intense fatigue I experience at night.  It has also been hard to accept that I may need to use a wheelchair as my legs keeps becoming worse over time

16. Something I never thought I could do with my illness that I did was… Probably graduating university and attaining a degree in Psychology.  It was a lot of hard work and draining physically but had a lot of help from the University itself to be able to achieve this

17: The commercials about my illness: There are none really as it is rare; have not met anyone else with the same condition! I would say that it is quite similar to MS

18. Something I really miss doing since I was diagnosed is… Going on shopping trips with my Mum to our local city centre (Cardiff).  Since my legs have become so much worse am unable to go as a lot of walking is involved as well as not being able to queue in the big department stores as my legs often give way

19. It was really hard to have to give up… Doing all the exercise that I enjoyed such as going on my exercise bike or going on walks as not only is it beneficial physically, I often found it helped with mental well-being

20. A new hobby I have taken up since my diagnosis is… Using an exercise machine called ‘Aeropilates’ it gives me the opportunity to take part in cardiovascular exercise whilst lying down without worrying about suffering any falls.  Another hobby is writing this blog, something I wouldn’t have done if it wasn’t for the illness

21. If I could have one day of feeling normal again I would… Go on a big shopping spree!

22. My illness has taught me… As I was misdiagnosed with suffering from anxiety before being diagnosed with the neurological condition, I therefore have learnt that doctors are not always right and that if we feel that there is something wrong than we should find an understanding doctor who listens

23. Want to know a secret? One thing people say that really gets under my skin is… “There are people much worse off than you”.  Yes, I understand this but it still doesn’t help!!

24. But I love it when people… Listen to me and tried to understand even though it can be difficult due to the unpredictable and unusual nature of the illness.

25. My favourite motto, scripture, quote that gets me through tough times is: “Every day not be good.  But there is something good in every day” – So true!

26. When someone is diagnosed I’d like to tell them: It is not the end.  You still have a lot to offer just need to be open to new opportunities

27. Something that has surprised me about living with an illness is:  Although that I do not know anyone else with the exact same condition, I am still not alone.  There are many other people who experience the same struggles as myself and whom I can learn from and can support each other through the tough times

28. The nicest thing someone did for me when I wasn’t feeling well was: Sending me a lovely present in the mail to cheer me up.

29.  I’m involved with ‘Invisible Illness’ Week because: To spread awareness of the difficulties faced when living with a chronic invisible illness; to educate people that although you cannot see the problem does not mean that it doesn’t exist.  That people with invisible illnesses are not faking or are lazy and that we should be careful when making snap judgements about people.  It’s a cliché but it’s true: ‘You cannot judge a book by its cover”.  It would also be nice to connect with others living with invisible illnesses like myself for support and friendship

30: The fact that you read this list makes me feel: Positive and that I have helped the cause; and that I have successfully made people more aware of the impact of invisible chronic conditions.

Thank you for reading my answers to the questions!  I would love to know your thoughts on any of the subjects raised by the questionnaire.  Please feel free to add any comments below.  If you would like to connect with me privately, you can now email me at the following email address!:

brainlesionandme@gmail.com 

 

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