Why my Chronic Illness does define me

Ever since I became a part of the online Chronic Illness, Disability & spoonie community online I came across this quote- “Don’t let your illness define you”. I never quite understood this quote or the meaning behind it. What do they mean by don’t let your illness define you, is that a bad thing?

Maybe I’m just sensitive and over thinking this quote way too much. This quote invokes the same emotions in me as another quote – “The only disability in life is a bad attitude”. I get the same bad taste in my mouth every time I read or hear them.

Maybe the purpose of this quote is to inspire you to be “bigger” or “stronger” than your illness, to hide your illness away in shame. After all none of us want to admit something has defeated us or controls us every day.The problem I have most with this quote is that I feel my illness does define me, and this quote makes me feel as if that is a bad thing and I’m weak.

I got sick at the age of 13, I’m currently 21, so I have spent my entire adult life being sick and disabled. I have experienced things such as being called a faker, told my illness was all in my head, I’ve been told to just ignore the pain, doctors have refused to treat me, family and friends doubted my illness. I was forced to stay at home due to illness, went from doctor to doctor trying to find a cause of it all, I lost many friends due to my illness, missed many amazing opportunities, and eventually had to drop out of school completely.

To say my experience with Illness has shaped me would be an understatement.

My illness does limit me, my illness dictates what I’m able and unable to do at every moment. Do I have enough energy to take a shower? Can I make myself a meal without being in too much pain? Will I be able to eat the meal after making it? Will I be able to wash my hair today? Can I shave my legs without causing too much pain? How much pain and exhaustion will cleaning my room cause? Do I have enough energy to get dressed to go out? Will I be able to walk through the store without needing a wheelchair? Will I need to use a wheelchair today? If I eat this will I become more nauseated? If I read will it cause a migraine? Will I be able to sleep tonight? Can I force my body to endure a night of fun with my siblings? – These are all things I have to ask myself on a regular basis.

Once you experience an illness that dictates and controls every single moment, movement and thought you make it start to become a part of you and defines you as a person. It shapes who you are, your outlook and goals in life, it changes your attitude towards things, it can have a big impact on your mental health, moods, and emotions, it will impact your family, friends and your social life. It will change you as a person.

I am not ashamed to say my illness has defined me. It defines me no more and no less than the place I live, who’s daughter I’m, what hobbies I’m interested in, and the things I stand for. Being sick has taught me compassion, empathy, humility and has made me into the kind, mature and understanding individual I am today.

My name is Shaelene Robar, I live in rural Nova Scotia, Canada. I enjoy nature and photography, I spend most of my days making YouTube videos and connecting with other spoonies. I have Chronic Lyme Disease, Chronic Pain, Fibromyalgia, Chronic Fatigue Syndrome, Multiple Chemical Environmental Sensitivities, and MTHFR Gene mutation. I am Chronically Ill and Disabled. These Illness make me who I am and are some of the things that define me as a person, and I’m ok with that.

The takeaway? It’s ok to let your Illnesses and Disabilities define you. It makes you no less of a person. You’re not giving into your Illness or Disability- you’re merely accepting that its a part of you, it makes you – you!


Thank you for reading, hope to see you soon!

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