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.
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…
Comments
Wow I can’t believe how much I can relate. This pass week my leg trembling has got so bad I refuse to go anywhere or walk far other then stay at home on my sofa or bed. Reading about yout symptoms and experiences was like I was looking at myself,I even read it out to my partner because I’m just sitting here shocked upon reading somone else’s experiences mimic mine. I too use a crutch to which I can only gather are the same reasons you do. I could quite easily relate and understand your need for a wheelchair. And how I imagined my experience would be out and about in it, seems to be the case. There’s been many times my mother has suggested clothes shopping, I’m loosing so much weight that clothes just hang off me. We have joked around suggesting a need for a wheelchair and then joked again, how funny it would be to see people’s faces when I get up out or my chair to use changing rooms or toilets etc. So you have proved my thoughts on your experience and I did giggle that I was right. But still it shouldn’t be like that, I shouldn’t have expected it to be like that, but as you say, society theses days, you just can’t help but assume people would think like that.
Myself, I’ve been unwell for 19months, the NHS disappointing majority of the time, and the more I read people still undiagnosed I can’t lie and say this doesn’t nerve me, it does, I don’t want to be ‘that person’ I don’t think anyone wants to. Everyone wants a diagnosis with a outlook of when your life can gain normality again. Currently my health has decreased a huge amount, this pass week has dipped and it certainly has scared me, normally I don’t notice its family that do (as I’d imagine yourself can relate, you get so use to your ‘new’ life at this moment so why would u notice change’ ) but upon me notifying it worries me. At this moment they are testing for addisons disease in which I match every symptom so far. I shall have a more ‘black n site’s test hopefully next week. I don’t hold hope for a diagnosis and instead have learnt to just appreciate the ‘next steps’ currently being taken.
Sorry I’ve gone on for ages in which was meant to be a short simple comment. But thank you for your blog post it was enjoyable To read with the realisation of not being along and being able to relate. For what it’s worth, I had no idea what last weeks awareness was, so thanks for the information 🙂 hope your keeping as well as one can be
Hello Samantha
Thank you so much for your lovely words! I am so relieved that what I wrote was something that people like yourself can relate to. I am so sorry you are also dealing with trembling legs – I know how hard, uncomfortable and frustrating it is to live with, at the moment it’s so severe that I have been unable to sleep much at all so was slightly nervous about writing something with such little sleep in case I didn’t make sense or what I written would be rubbish!
You are right that the judgements that people make is so wrong – it really is, not only is it horrible that people think you are faking just by taking a few steps out of the wheelchair but also some (thankfully a minority) people tend to look down at you, talking to me as if I’m stupid or a child. Thankfully, it’s not every person and most people are lovely and very helpful.
So sorry to hear of all the troubles with trying to get diagnosed – I had the exact same problem for several years before getting diagnosed, and so am aware how frustrating it is attending so many appointments with little answers. At the moment I am back at seeing doctors as some new symptoms have presented themselves so back at going through tests and seeing various doctors so sending hugs to you and really hope you get some answers soon.
Thank you again for your lovely comment.
Take care of yourself and if you need to vent or anyone to talk to then please feel free to email me at brainlesionandme@gmail.com
Rhiann xx
That’s so lovely of you. And I do hope them other symptoms they get to the bottom of that, many tens to give up if they have managed to partly diagnosed you. I totally get that, being tired and worried on what your typing doesn’t make sense. It made sense so no worrying there 😉
Myself, I’m itching to write my next post but I’m feeling so poorly I physically can’t, and it’s the worst when your lying there and things come up of what you just wanna write out but physically you can’t yet, so you think to yourself, ” ahh I hope I can remember that by the time I manage to write. ”
Anyhow I enjoy your blogs, I haven’t noticed one for a while for some reason eventhough I check my reader regularly, was it was nice to stubble across yours. I do try to keep a look out; Anyhow same goes for you, Samantha.timms1@gmail.com
Xx
I think the world would be a better place if we were all better to suspend our judgments about other people. To consider that there is a story behind what we see on a first glancing impression. After all, each of us knows that is true of our own story and yet we find it so hard to grasp that about others. It takes time and energy to recognize that what you see is almost never what you get. And some of us are exhausted just from putting up that front to the world.
Rhiann,
Beautiful post. You raise some interesting questions! I’m better for knowing you. Hugs and love.
~Marissa
Thank you so much Marissa! You have been a great influence in my life!! Miss you loads! We will have to have a Skype catch-up soon!! xx
Reminds me of a time when I hired a wheelchair and walked off with it saying…it’s there for when I’ve done enough walking and need to sit down and be pushed! #MS
I am a long time sufferer of lupus, fibro,restless leg syndrome and depression and I have a can to use due to all my falling. Do I use it! NO!! Why? Cause I hate when people ask me what happened and I don’t feel the need to tell them about my invisible illnesses. Help me to get over this and to just use my cane
Thank you for your comment. I am sorry that you are suffering with many health conditions which are impacting so much on your daily life, and that falls are a daily occurrence. I can really empathise with your need for one but are reluctant to do so for the fear of being judged or being asked questions by others as I have gone through this myself when I started using my cane, then my crutch and now my wheelchair! I think you need to accept your need for one, and begin to think of the cane as an old friend who is supporting you and helping you when out from falling over and potentially having a nasty accident. Often, falling over in public is more embarrassing then using a cane or other mobility device. Also, try using one which is brightly coloured or has pretty patterns on it as people would be more likely to comment on the cane itself then your need for it! Found that this helped me as my crutch is bright orange (and also have one in pink) and everybody asks me about where I go it from much more then why I need the crutch in the first place!
Hope this helps
Take care
Rhiann xx
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Your story has really helped me. I suffer from anxiety. It is feels like the most invisible illness at times. I am ok physically and most of the time mentally. Everyone asks why I am not working. I don’t want to have to explain. It is a lonely road at times.
Liz
Australia
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