Emma - "I am a person, not a label"

Emma decided not to share a photo with her story, due to the stigma she still experiences on a daily basis.  But I felt that by sharing her story she was making herself visible in a different way.  Don't forget, stories can also be shared anonymously at the main blog: Visible Invisibility. This post will be reproduced there too.

I can't remember a time when pain didn't take hold of some part of my day, as a young child I would think up excuses not to do sport at school just because it hurt too much to run, that or I'd fall and trip causing yet another broken arm or leg.  You could say it was clumsiness, others may say it was Dyspraxia.

I was forever writing poetry in my teens one particular line I will share with you all "this young girl remains in bed all day and night and week and month, ears burning from the radio and eyes on fire from the day light, tucked up in her bed, tucked up like the invisible disability she is having her life stolen by".

In my late teens they - the medics that is - decided to add some labels to the symptoms, Chronic Pain, Arthritis, ME, PTSD, Bipolar, yet although this explained some I still maintained I am a person, not a label.  A few years later Keratoconus, Mytopia and Macular Degeneration added to the mix, well they explain to a point the visual stuff.  Then, a while later a white stick given, for the days when my hands don't lock and find it too heavy to roll around, legal blindness confirmed and a cataract too.

Yet in spite of it all I am married coming up for my 2nd wedding anniversary, about to graduate with a BA Hons in Social Care, and determind not to let my health rob me of even more of my life.  Just some days I wish I could crawl back to bed and hide from the world, yet others like today I am able to share a glimps of my world in the hope others don't feel as isolated in theirs.

The VIP is Still Running!

Just a quick note to say that this project is still running, but unfortunately I have been dealing with some relapsing symptoms and medication side effects which have rather zapped my energy of late.

I have a couple more posts to go up, which will be published shortly, but in the meantime, please feel free to share this blog around to keep the momentum going!

Love and hope,

Shelley

Monique - "I try to stay home as much as possible so that I don't have to deal with peoples judgement"

My name is Monique and I have Fibromyalgia, migraines and Chronic depression. I am a 27 yr old SAHM homeschooling my autistic son. I try to stay home as much as possible so that I don't have to deal with peoples judgement and assumptions when I walk out of the car in a disability parking spot or use a stores electric carts to prevent causing more pain than I need to. My husband is always getting mad at me because I let people get to me and try to go without assistance or pain meds and end up worse off and with a terrible flare the next few days. I started having symptoms of chronic depression when I started puberty, and my Fibromyalgia symptoms started after the birth of my son nearly 6 years ago, we are still trying to find a good medicine combo to help my pain levels.

I worry I am not giving my son the mom he deserves, and I fear for him because he lives with an invisible disability of his own (PDD_NOS).

Amy Marie

Amy writes:
I'm sending one picture of me in a flare, on a really bad day.  I'm also sending one of me looking "normal" and smiling with my invisible illness.

I have never lived a day without pain.  I remember being as young as four years old and crying, asking my Daddy why I always hurt so bad.  No one came up with any answers, though.  It wasn't until I was 15 that I was diagnosed with my first chronic pain condition, fibromyalgia.

About four years ago, when I was 26, I was diagnosed with Epilepsy, which has explained a lot of other mystery symptoms I have had.  A little over a year ago, at age 28, I was diagnosed with Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder that causes me severe chronic pain, joint dislocations and subluxations, GI problems, fatigue, TMJ dysfunction, abnormal scarring, and it gives me a propensity to develop osteoarthritis, osteoporosis, and degenerative joint disease all earlier than other people.

I am now 29 years old and use a snazzy shiny red walker.  I am a lot more than just my illness, though.  I graduated with honors with a Bachelor of Science in Business Administration-Accounting and a minor in English.  I am an avid reader, writer, pen paller, and blogger,  I am addicted to Twitter and Facebook and use social networking to spread awareness of Fibromyalgia, Epilepsy, and EDS.  My dream is to be an accomplished writer.  I've been winning writing awards since I was eight years old and couldn't imagine going a day without writing.  I still have mystery symptoms, and still am searching for the cause.  I plan to do a lot of Fibromyalgia education and awareness work from home on my computer on the FMS and ME/CFS Awareness Day, May 12th. 

 

If you would like to take part, take a look at the Take Part page, or email your submission to visibleinvisibility@gmail.com

 

Taking Part in the Visible Invisibility Project

It has been brought to my attention that some people are having difficulty finding out how to join in with the VIP.  In the interests of accessibility, I have made a few changes to the blog and the format of entries.

Previously, one of the buttons at the top of the entries had been titled 'Instructions'.  I have now changed this to 'Take Part', in the hope it will be a bit more self-explanatory. 

I will now also be adding the following to the bottom of each post, so that if people click on a link to a standalone post they can instantly see how they themselves can join in:

If you would like to take part, take a look at the Take Part page, or email your submission to visibleinvisibility@gmail.com


Finally, here are the instructions once again, for how to join in:

Email a  photograph of yourself to visibleinvisibility@gmail.com

Please include your name (it doesn’t have to be your full name, it could even be a pseudonym), and what condition(s) you have. 

Feel free to add any other details about your photograph, life, achievements, condition(s) or daily living if you would like to (and have the energy to!).

Naomi

My name is Naomi and I'm seventeen years old. I've had M.E for about 2 years now. Although I'm lucky as in I can mostly attend school, I am unable to walk very far and haven't been able to eat normally since 2009. I am very fortunate to have such lovely friends and family to help me through everything, and I know that when I'm better I won't take a single thing for granted and always spare a thought for those who are suffering.

Each day of being ill is a day closer to being better ♥


If you would like to take part, take a look at the Take Part page, or email your submission to visibleinvisibility@gmail.com

Sally

Sally wrote:

"Hiya

I have ME, migraines, asthma, depression and actually going for a Hospital appointment this morning as my OT thinks I may be bi-polar.

I've attached 2 photos of me on my wedding day, one before make-up and the other after. I don't mind which you use but I do look healthier in the after photo, make-up artist worked a miracle!

Cheers and hope you're as well as possible

Sally xxxx"


While I've only used one picture in previous posts, Sally makes a brilliant point - that often those of us with chronic illness only show our very best side.  So for that reason, I felt this was an excellent opportunity to show both sides, and how much effort many of us take to conceal our conditions.

And I think you're a beautiful bride with or without make-up, Sally!

Like The VIP on Facebook

Now you can find The VIP on Facebook.

Lucy

I'm diagnosed with M.E. - it was originally diagnosed as CFS just after I turned 15, but I ended up with a lot of other symptoms besides tiredness, including the telltale aches & pains etc.

 

I'm now 21. I currently volunteer at my local primary school and am hoping to go back to college in September to do a course in childcare & education.

Vicky

I'm a 28 year old art graduate and animal lover. When I was 15 I became chronically ill with ME and paralytic migraines after receiving a polio vaccine. Nowadays I'm lucky enough to have improved to a point where I can live a relatively normal life. I work part-time running a small sewing business from home, and can even have a bit of a social life if I'm careful.

I tend to keep quiet about my conditions because of the stigma attached to invisible illness. When I go through a bad patch, I cut myself off from the outside world so I don't have to explain anything. I'd love to be better at asking for help when I need it, and to not have to rely on my partner so much.

My proudest achievements are my Art and Design degree and my business. I enjoy knitting, crocheting, reading, watching too much CSI, and drinking too much tea.

Shelley

This picture shows two of my greatest achievements at once.  My son and I, taken on the day I graduated with a Masters in Health Psychology in November 2009.

I have achieved these things, despite having Ehlers-Danlos Syndrome, ME, Fibromyalgia, Hypothyroidism and Keratoglobus.

I am now a single parent, work part time and enjoy being creative, knitting and trying to raise awareness and do charitable work in my spare time.

It's May!

Each month I would like to focus attention on conditions which are running awareness campaigns in that month.  Please send in your contributions whatever your condition though!

May is:

• International Lyme Disease awareness month
• International Hepatitis awareness month
• International M.E. awareness month

In the UK it’s Osteoporosis awareness month and Cystic Fibrosis month.

It’s Lupus awareness month and Ehlers-Danlos awareness month across the pond in the USA.

• World Asthma day – 6^th May
• World Lupus day – 10^th May
• International ME/CFS/Fibromyalgia day – 12^th May  

• Dystonia awareness week – 7^th-14^th May
• ME awareness  week – 8^th-14^th May
• Epilepsy awareness week – 15^th-21^st May
• Coeliac awareness week – 16^th-22^nd May
• Multiple Sclerosis awareness week – 23^rd-29^th May

Please use the comments below to add any that I haven’t included.

Welcome

Life can be tough when you’re unwell.  For the majority of people, illness is short-lived – they quickly recover and get on with their lives.  However, for many this just isn’t the case; their illness stretches out over weeks, months, years, decades even.  They are the chronically ill, often disabled, house and bed bound by their condition(s).  Life becomes even tougher, being ill day in, day out.

What makes it worse is that often the chronically ill don’t look ill at all.  Or they may only get out and socialise when they feel (and look) well enough, on their very best days.  “Oh, but you look well,” is far from the reassuring, well intended compliment it was meant to be.  Instead it becomes a a panful dismissal of the suffering endured by people with chronic illness.

Because of this, many of the chronically ill and invisibly disabled people in society choose to hide their conditions rather than encounter disbelief, dismissal and prejudice.  They become invisible. 

The knock on effect from this is that it becomes much harder to identify others who are suffering.  The advent of social networking has been a massive breakthrough.  Personally, I have met more people suffering like myself in my 8 months of using Twitter daily, than in my entire 29 years of life and illness.  ON Twitter, we use the #spoonie hashtag to identify and reveal ourselves to each other, a reference to the Spoon Theory at ButYouDontLookSick.com.  We become visible again.  In real life it is far harder to find other #spoonies.  Whether or not it is in hyper or meat space, when #spoonies do meet each other  an instant safe space is created, a place to share and receive the support we deserve, without fear of judgement. 

It is fear.  Fear of judgement, of having to spend precious energy explaining, and defending, ourselves and why our lives aren’t the same as others, of being told it is all in our heads, that we can think our way out of illness, or worse, being told the latest quackery on ‘how to get well’.  It stops people from standing up and being counted, from saying, “I am a valuable member of society.” Which of course, we are.

And that’s really what the Visible Invisibility Project is all about.  It’s a space to say “This is me, I am valuable.”

We all have different sills, talents and abilities.  Whether you work or not, are a parent, are childfree, are a partner or carer to someone else who is also unwell, whether you have your own business, group or project, a degree, are creative.  Whatever you have achieved whilst battling against chronic illness is worth celebrating, however big or small.

So please stand up and be counted.  The VIP isn’t political, I don’t intend to set the world alight, but I want it to work.  I want us to show the world we are everywhere, we have sills, talents and lives.  We struggle, but we keep on..  No matter what your condition, if you have ever felt invisible, join in, show others that they’re not alone, and that like the initials of the project, we are all VIPs.

Love & hope