My Own Journey

My interest in the subject of invisible illness began about 8 years ago when I was given a ‘probable diagnosis’ of multiple sclerosis. I basically had a some sort of neurological breakdown or malfunction resulting in lesions on my brain and some paralysis down my left hand side. This diagnosis is ‘unconfirmed’ meaning the doctors are still waiting for more evidence that it is MS. This can take many years.

 

Just recently I also received a diagnosis of Chronic Fatigue Syndrome (ME). In a way this has proved more of a struggle and much more political than the MS diagnosis. When I’ve told friends I’ve been met with a mixed reaction. ‘That’s yuppie flu isn’t it?’, ‘So you’re tired all the time?’, ‘I think I must have that, I’m tired too’, ‘But you don’t look ill’.

It is the most profoundly upsetting feeling when friends and family think we’re making up an array of symptoms that have absolutely changed our lives, our relationships and our work lives forever. Everyone that I’ve met who has an invisible illness says that all they want is simply to be believed.
Because of this living with an invisible illness can be very lonely, and often causes knock-on conditions like depression and anxiety.

Admittedly before I became ill I knew nothing about invisible illness and have definitely judged others in the past. (You can’t be ill, you’re at a party). But it’s ok, it is very human to do this, and it’s natural to make assumptions based on what we see in front of us. Of course as intelligent and generally empathic beings we do also have the capacity to question our assumptions and change the way we think and respond. If it matters. And it should matter because many of these conditions could easily affect you or someone you love.

There is still so much stigma around invisible illness and so much hostility from society in general. It doesn’t help that even our government have decided these conditions are not worthy of consideration for disability benefits, seeing millions of disabled people having their Personal Independence Payments stopped last year.
Then having friends and family also doubting our conditions can be dreadfully distressing. Some people describe having an invisible illness as like being trapped in their body or losing all sense of self.

Personally I have found it really hard to hold on to who I am and how I relate to the outside world since my illness. It has affected my self esteem and view of myself as a woman. I’ve always tried hard not to portray myself as someone who is ‘sick’ as I don’t want to be judged. But I’m not sure this is helpful either in helping friends understand.

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I hold on to my work as a photographer and artist as a sort of anchor. It makes me feel valid as a person and helps me keep perspective. And I hope that by using my platform as an artist and opening up the conversation about invisible illness we might raise awareness. We all owe it to each other to use whatever means we can find to shout out loud, raise awareness, challenge assumptions and make a world where even illness that’s not immediately visible is treated in the same way as illness that’s visible.