All the People Living with Invisible Illness

For all the people living with invisible illness: you’re not alone.

As a sufferer of a progressive but invisible disease, I often pause at the standard box on forms saying: Are you disabled? Am I? If I look at my ability to thrive in comparison to others, then certainly yes. If I look at my heightened needs and required adaptations of situations then certainly yes. But I don’t like to admit it. 

Many people with invisible illness struggle in life or work, first overcoming the blow to self-confidence and second in coping with the hospital visits and inevitable stress. There is even the dilemma of the level of sharing, because there is always the risk of sharing a disability making one into an anecdote or scapegoat in toxic environments.

Women working part-time are less likely to get into higher roles, and can be paid even less than the pro-rata proportion. Women already face prejudice and child-related challenges in the work-place, so when I meet disabled women, I am completely in awe of their strength. 

The American folk singer Gaelynn Lea has a beautiful voice and soul and never lets her congenital disease disability hold her back, despite being a wheelchair user. She accepts it and works with it, even holding her fiddle in the manner of a cello to accommodate her physical stature. This actually creates a unique sound as the bow strikes the lower string first.  

The comedian Rosie Jones is hilarious, using her cerebral palsy to her advantage in her jokes. She delights in toying with the audience’s expectations and in doing so is educating as well as entertaining. Her outlook is so positive and her vocation as a comedian matches perfectly with her ability to see not only the bright side, but the funny side.

An admirable quest is how to turn perceived weakness into strength. We can learn from these inspirational women. I love looking to other women for inspiration, and Herstory is a practise I adore of finding and sharing stories of women throughout history. Women need female role models. Everyone needs a role model they can identify with who has had similar struggles. 

The disabled and lifelong ill community connects primarily through health services or support groups. But for those problems that do not simply go away, we need to encourage acceptance and normalize adjustment requests.

Elizabeth Hynes

Elizabeth Hynes is an avid writer and activist for human rights and she works in IP in the Netherlands. In her downtime she enjoys cooking food from around the world, hiking the great outdoors and crafting.

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