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The Forum > Article Comments > Stop and think: invisible access for invisible disabilities > Comments

Stop and think: invisible access for invisible disabilities : Comments

By Lauredhel @Hoyden, published 16/1/2008

The personal experiences of a Chronic Fatigue Syndrome sufferer - an invisible disability.

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Thank you so much for sharing your experiences. I have Fibromyalgia along with Mixed Connective Tissue Disease, active lupus symptoms, and sarcoidosis. The "spoon theory" was one of the only ways I could get my friends and family to understand what was going on with me. I am now disabled, not having been actively working since January 2006. I have a handicap placard for parking, and get some strange looks at times, but I don't bother to give explanations as it just too exhausting to do. I hope that everyone who reads your article will realize those of us with invisible disabilities face just as many challenges in our lives as those who have a visible disability.
Posted by SuzyS, Thursday, 17 January 2008 5:26:27 AM
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Thanx - that took guts!
Two decades ago I was earning a crust writing for TV in LA and my writing partner suffered from CFS. She was at the height of her career and suffered enormously from a general lack of understanding. She eventually left the industry. Curiously, Australian research was the light at the end of her tunnel.
I have just finished more than a year with a disability, badly broken leg keeping me housebound, and heartily endorse your broader remarks.
I know that my view of the world has changed forever. May you help to change a few more!
Posted by ozscrnwriter, Saturday, 19 January 2008 5:04:49 AM
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What a brilliant article. This describes our world every day. I had just parked in a parents with prams sections which my disability sticker allows me too and I had a parent complain how hard it was to find a car park for his twins. I had no problems telling him why I'm parking there. He got a polite education in disabilities aren't always visible and not to judge the book by the cover and maybe also consider how blessed he to even be able to have children. I really need to get one of those Invisible Disability Stickers for my car.
Posted by zahira, Monday, 21 January 2008 12:27:59 AM
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As per the countless thank-yous before me, I too would like to extend my thank you for taking the time (and spoons) to bringing CFS to a wider audience.

I've suffered from CFS with POTS since December 2006, after contracting glandular fever. However until October 2007 (when I was diagnosed) like many of the respondents, I, too felt I was going out of my mind wondering what was wrong with me. I had a medical library of symptoms but nothing made sense, this was only accentuated by unsympathetic doctors who looked down at me thinking I was just another "sad University student who didn't have a clue". It took several doctors before one finally listened to me and didn't cut me off to ask me if I was pregnant. For some reason - fatigue, muscle pains, headaches, nausea and dizzy spells automatically means you're pregnant - as you do. The amount of times I held my tongue I'm relieved I didn't draw blood...

Today, just knowing I'm not alone allows me to understand that you're not mad and its real. Understanding from others is sometimes shrouded with confusion "why are you okay some days and then the next you can't move?" and for that I am so glad you referred to Spoon Theory. This theory has been my saving grace with loved ones and allowed me to interact with others with CFS / ME.

Thank you again for sharing such a personal story. Here's hoping to a mass increase in spoons for 2008 : )
Posted by Miki262, Saturday, 2 February 2008 12:44:47 AM
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