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I am Caitlin - not my disability

September 11, 2019

Caitlin is 17 and has been living with chronic health conditions including M.E./CFS for the last five years. She has produced a three part photography series which discusses the different aspects of life with chronic illness. This is part 2:

"This image is probably one of the most important in the piece as it includes the comments I have received for the last 5 years of having chronic illnesses. Some of these comments I have received from healthcare professionals such as “fake” and “your not making any effort” is a comment often received from “friends”.

"I was told that I was too young for Fibromyalgia countless times by many different healthcare professionals. This and them telling me “it’s just growing pains” for over 4 years was extremely frustrating. It makes you feel insane when they tell you “it’s all in your head” because it makes you doubt if you yourself are faking the pain or if your causing the pain. The more I went to the doctors the more they tried to send me away with comments such as “your just anxious/ depressed. Professionals told me to go away and do some exercise and challenge myself more as I was capable of a higher level of challenge, as if that was going to help me manage my pain better.

"Due to my diagnosis of Chronic fatigue/M.E. exercise is something that cannot be done full force and barely any at all as I am constantly at a loss of energy. Being told “we all get tired, just sleep” before being diagnosed is extremely frustrating and made me feel lazy.

"By this image being the main focus of the piece I really do hope that people re-evaluate how they treat others especially those who are fighting for diagnosis and relief on a daily basis. I get comments such as “you don’t look disabled”. That comment baffles me as what does “disabled” look like? There are so many different kinds of disability and conditions that can cause it and in my case I look like me. I’m Caitlin, not my disability, that’s why I look like me and not “disabled”.

"I use my mobility aids as preventative measures most frequently but some days I can’t physically walk. The few months after I returned home from the pain clinic I was pulling myself along the floor with my arms just to get from my bed to the toilet when I was desperate. It then got to a point where I couldn’t move at all. My mum had to pull me along the floor on a blanket to get me to the toilet and back to my bed again. This was incredibly challenging both physically and emotionally. However I was refused equipment to help me even get to the toilet because “it may make you completely dependent on it which we wouldn’t want for a young person”. I can still walk and I am very very grateful for that however I do need to use mobility aids as I can’t walk very far and get an increase in pain and fatigue from walking. So please never judge someone from getting up and walking from their wheelchair nor for using crutches when they “walk normal” because pain still exists without it being seen.

"I really hope you have learned something from this and have re-evaluated the way you treat and judge others. Please don’t make any of the comments mentioned to anyone as they are ignorant and uncalled for. We are fighting enough as it is let alone having to explain to you why these comments are frustrating and ignorant. Treat those with disability and chronic illness the same as you would anyone else. We have a name and a personality and a life, we are not just a mobility aid or our illness."

If you would like to read part 1 you can find it here.

If you would like to read part 3 you can find it here.