"Where there is creativity, there is hope." ~ Donna Karan

Thursday, December 1, 2011

Making Sacrifices: Living with an invisible disability

I applied for disability support nearly two years ago now. At first, I was hesitant to do so because, stereotypically speaking I am not disabled. But the truth is, just because I am not obviously a cripple or invalid and lack the tell tale signs of a serious injury; it doesn't mean that I am not disabled.

For the past five years I have struggled to hold down a job and I haven't been able to pursue my studies. When I feel well enough the most work which I am capable of managing is between 3-9 hours a week, which, as you can imagine, is not an income suffice to support independence and self sufficiency. At present I am unable to work at all- if that's not disabled then I don't know what is.

After having my first claim for disability support rejected, and after jumping through several hoops, attending interrogating interviews and after mountains of paper work to prove my pain later- miraculously, my claim was accepted. Persistence payed off (excuse the pun).

I've never forgotten my first appointment with a disability officer. I was irrationally nervous about my "healthy" and glamorous appearance. Would they believe that I am disabled as I say I am? All I could do was honestly plead my case and explain the daily struggles I encounter and hope that they would see past my seemingly healthy radiant glow and appreciate the sacrifices that I've had to make all in the name of health.

Fortunately, they had a friend who also suffered with Fibromyalgia. They saw first hand how debilitating the condition can be. They were shocked to hear that I spent years trying to get my claim accepted, because in their mind, there was no doubt that I was in fact as disabled as I claimed. Sadly though, this is an all too familiar story for many of those who do not have apparent disabilities.

Before applying for disability support I didn't consider a chronic illness to be classified as a disability, nor was I comfortable being labelled with the term. Whether I like it or not though, the illnesses which I live with are debilitating and disabling- I am disabled.

Just because I don't require the use of a walking aid and don't need the assistance of a carer, doesn't mean that my symptoms aren't significantly debilitating. Just because I'm not wheelchair bound and do not have a physical abnormality or disfigurement or any such obvious problem, doesn't mean that I am not disabled.

The term "disabled" despite society's stigma, is actually a pretty broad one. There are numerous degrees of disability, impacting on individuals in various ways. On my worst days, I am just as disabled, if not more so, than say a person who is confined to a wheelchair.

There are many people who are able to still live an active and productive life despite more seemingly severe disabilities- people who are able to hold down a job, socialise and enjoy leisure activities. These people who have an acknowledged disability are able to do far more than I am able to do on some days.

Living with an invisible disability is incredibly frustrating and difficult, and just as a visible disability has its challenges, so too does an invisible disability. At times it's difficult to receive support- our needs are not as apparent as that of a wheelchair user. There are many judgements and assumptions made, and there are many misconceptions.

There are days when I wish that my pain was a little more obvious. Case in point: one time I was at the chemist waiting for a script, as you do. I had had a terrible night, was drugged up on codeine and felt something shocking. I felt faint and standing for a whole fifteen minutes wasn't achievable, so I put up with the glares, the stares and the silent gasps of my appalling decision to not give up my seat for an older woman. Little did people know that I have arthritis too.

Many people don't know the sacrifices I've had to make because of my illnesses. Most people see me on one of my better days- they don't see the days that I can barely drag myself out of bed. They don't see the times I struggle to function because of bone crushing fatigue and brain fog. All they see is a supposedly healthy, glamorous, well dressed, immaculate presented woman who was able to spend some time shopping with friends, and so they wonder why I am unable to work.

I live with unpredictable symptoms of which I have no control over. One minute I may feel relatively fine and the next, fatigue hits me like a ton of bricks or the burning pain becomes all too consuming. Just because I am able to do something one day doesn't mean that I can do it the next- that's just how life goes with a chronic illness, and for some people that's a pretty difficult concept to grasp.

Because of chronic illness I have had to sacrifice everything. I've had to sacrifice my toned and trim to-die-for figure. I've sacrificed my social life, I've had to give up studying the course I've forever longed to do, I've had to give up work and the list goes on. I have to make sacrifices on a daily basis. Sacrifices that people often don't hear about or see. If I want to exercise, I have to make sure that I'm not doing anything important or necessary following the next few days due to post-exertional malaise.

If I want to go shopping, I have to allow my body time to recover and re-cooperate. On the odd occasion that I do attend a special event during an evening, I spend half the night trying to get pain under control wondering if the fun I had was in fact worth it. Not to mention the next day I am often completely unable to function. Forget hangovers.

If I want to do something special, or have planned an afternoon out with a friend, I have to refrain from over doing it in the days and sometimes even weeks leading up to it. Every activity I achieve I pay the price of pain for. If I want to blog, bake or craft, my cognitive function and fatigue levels are compromised. Even writing this post has aggravated the pain in my back.

So next time think before you say "But you don't look tired" or "But you did that yesterday" and "Well it can't be that bad if you're doing such and such". You know my name, not my story. You don't know the sacrifices I have made to live successfully with an invisible disability, so don't judge what you cannot see.

Essay written by Emily Ruth © ChronicallyCreative.net, 2011

******** This post is apart of a blogging carnival hosted by Carly Findlay over at Tune into Radio Carly for International Day of People with Disability on December 3. International Day of People with Disability is a United Nations sanctioned day that aims to promote an understanding of people with disability and encourage support for their dignity, rights and well-being. The day also seeks to increase awareness of the benefits of the integration of people with disability in every aspect of political, social, economic and cultural life.


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abcsofra said...

I know it is a great relief to finally get your disability approved. And yes, every single thing you have written is right on cue. No one knows another's story until they walk in their shoes. I try not to judge others and I wish they would do the same. But alas, that is not always the case.

HealingWell said...

Beautiful post Emily! ~ Peter

AfternoonNapper said...

This post resonates very deeply. There's so much here with which I identify—even the not giving up the chair... I had a similar experience at The Olive Garden after having triple bypass surgery at age 25. Emily, please post information about how to follow you directly via Twitter or FB or a blog. I would love to stay in touch.

Sarah Bellany said...

Very eloquently put. :)

Congratulations on getting your disability application accepted.

I know how hard this is physically and emotionally.

Well done


Alanna said...

Beautifully written Emily, this really touched me and has bought tears to my eyes. Congratulations on finally getting your application accepted - so very very happy to hear that.

Miss Chronically Creative said...

Thank you all so much for the sweet, sweet comments x

@afternoonnapper- the links to my twitter and facebook page are at the bottom of this post and the links are in the right hand side bar too. Thanks for stopping by! :)

Desiree said...

Wow. Every single word (and disease) we share - except I have adenomyosis also. After struggling through the last 18 months and endo op in May I have (sometimes) got a social life again. I've managed to keep my job through absolute desperate determination and 30mg of duromine every morning so that I can get of bed each day.
I've dissolved my stomach lining twice with painkillers and am hoping therapy, accupuncture and massage will help.

Winter is a killer and I'm not sure how much longer I can stay in Melbourne as I am so much better when the weather is warmer. I'm also not resident so can't apply for disability despite the fact as NZ citizen I can spend rest of my life here paying taxes (and have done since 2007).

Anyhoo - we all have something, I struggle but try to see the gift in everything and have found some in this quagmire of illness and disease. My creativity was put on holdfor a year because I lacked the strength but resumed with costume design for an indie film in August and it was as tough as it was rewarding.

Just found your blog and working through it but loving it so far. Love and health wishes to you in 2012 :)

Desiree x

PS. In another coincidence - I call my father Papa Bear as well :)

Miss Chronically Creative said...

Hi Desiree!

Thank you for your lovely comment, you've made my day! Sorry it has taken me so long to reply, I have fallen behind a bit and your comment didn't even show up in my inbox for some reason.

ohh aren't we just awesome! I'm having a good run with endo at the moment- my last lap was a great success, but I have really struggled with it too, so I totally understand how tough the disease is. Sorry to hear you have adenomyosis too.

That is great that you have managed to keep your job and somewhat of a social life- I am so happy for you. I really admire those who can work despite multiple illnesses. I have still have a job but I haven't worked in over a year now because the fatigue has just gotten too bad, but I'm working towards getting back to work one day soon.

I'm really hoping to get my social life back this year too.

Yikes!! Yeah I don't really like what some pain killers can do to your body but it's tough when you have no choice but to rely on them to help you get out of bed. Let me know how the accupuncture and massage go- I hope it helps you!

Winter sure is a killer! I do better in the warmth too in terms of pain but Melbourne hasn't really provided much of a summer this year. Quite dissapointed.

Oh that's a bummer about disability. The rules seem silly sometimes.

You sound amazingly creative. I love it! And I am loving the coincidences :-)

Happy new year to you!


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