Why it is Disrespectful to Correct me when I say that I am Disabled

It has taken me a long time to accept my label as a young person with a disability but now I feel quite confident labelling myself as disabled. This seems to throw people off when I say it out loud because they immediate jump to my ‘defence’ and tell me that I am not disabled, I am just unwell. While your intentions are good, this does not comfort me at all. Instead it makes me feel as though you don’t think my conditions are serious enough to meet the standards of ‘disability’. Continue reading

A Letter To The Man Who Loves Me Despite My Chronic Illness

When I met you, you were a little lost. You didn’t know what you wanted to do or where you wanted to go. I, however, had it all worked out; the city move, the study, the career. The more I got to know you the more I realised that I wanted you above all other things. Continue reading

When Seeking A Diagnosis Feels Like Seeking Disapointment

Going to the doctors is easy; you call and make an appointment, you turn up and discuss your symptoms and then your doctor presents you with an answer and a solution. However this is not the case for people like me, people with rare and chronic conditions that are difficult to diagnose. Did we realise this the first few times we went to the doctors seeking answers? Of course not. We all walked into that office expecting to walk out with answers and treatment. Continue reading

Re-Evaluating My Identity

“Tell us about your self” was written in the empty box underneath my name. This question was one that I had never struggled with before, in fact if anything I struggled to write about myself within the word limits that capped my answer short every time. This question was now one that brought tears to my eyes and churned my stomach. Why is it so hard to answer this simple question? I feel torn between holding onto my old identity and accepting my new one, but I have no idea what my new identity is. Continue reading

The Darkness That Came Before The Light

It’s about time I open up about the beginning of my journey because to truly understand how I got to where I am now, you need to know how hard it was to get here. Picture this. You are 21, in the absolute prime of your life. You are studying your hardest at university to achieve grades in the top 10%. Continue reading

What No Diagnosis Really Means

Never in my life did it occur to me that one day I would wake up sick and (potentially) never get better. I often brush over just how scary the unknown really is. When I let myself think about it, the truth is I’m shitting myself. I have no diagnosis, which sounds like no big deal right? Wrong. I can honestly say, living with an undiagnosed illness is one of the hardest things I will ever do. Continue reading

But You Look Great!

Without a doubt, this line has been used on myself by almost everyone I come across who is aware of my situation. While I am totally aware that people genuinely think they are complementing me, it just pisses me off. Normally, ‘you look great’ would be a compliment I would happily receive – however now this sentence comes with an invisible second part which makes it not so flattering. Continue reading