If I have to read another post or meme about “my illness does not define me” I am going to scream! I am still unsure of what the purpose for these types of statements are… seriously.
Let me step through this a little.
For each of us who have illnesses, diseases and disabilities we will all have our own experiences with it and it will vary largely on the extent of these illnesses and the impacts on our lives. this is simply a realistic. If you happen to be someone who may be able to live a mostly NORMAL life then, generally speaking, you will not find the situation much different from others.
However, if you happen to be someone who is largely effected and your life mostly altered then these factors play a much greater role in your life, what you can do and who you can be. They WILL define your life and your life choices! Every. Day.
These posts which fall under the heading of positivity porn and ableism are really meant to placate the greater number of able bodied people but do not help those who face real difficulty and fail to get proper supports day to day. Those of us who do face day to day impairments are not exactly brimming with gratitude for your serving of disregard and downplaying our realities.
The fact is that I have had to give up my career, many of the activities I once did, a lot of my independence and it is drastically altered my life choices… so, yes, it has defined me to a large degree! It defines the life I can have and the choices I can make.
Many chronically ill sufferers can not have children, careers, financial security and even struggle to find partners due to their conditions. Does this sound like some trivial factor? No! Definitely not!
So what is meant by the term “…define me?”
Does illness change us? Speaking personally it has changed me a lot! It has broken me down to my foundations, altered my outlook, changed how I value things and manage things, changed how I interact with my life, changed how I see others and also see myself. So I cant really understand how someone might say that it doesn’t define or redefine us!?
As you can see from the definition provided, our health does define much of what we can do and set limits and boundaries to our lives and futures. So I ask myself “what is so wrong with acknowledging this?” Why are we made to feel less, inferior, shameful or weak for acknowledging this? How is it more beneficial to try and downplay the realities of life?
I recall a disabled advocate who had several conditions which had rendered her in a wheelchair and caused her many struggles in life. She once said “… all the positivity in the world isn’t going to get me up 12 flights of stairs in a wheelchair…” And she was right!
At this point in my life I yearn for acceptance of myself and acceptance from the world. No more. I don’t want to have to inspire people by my positivity or pretend that my life isn’t different and at times heartbreaking. I don’t want the world to dismiss the plight of others with health conditions as simply whingers, malingerers and drains on society and for as long as I live and breathe I won’t be beaten down by the pervasiveness of positivity porn and ableist rhetoric. I will continue to speak my truth.
Acceptance offers more power than most people imagine. Especially for those who can then use this as a platform for better life plans and choices. It’s not easy to temper some of our dreams and ego with reality but it is often a more stable way of living a life and reaching goals. Today my goals are completely different than prior to my health changes. Today I must be happier with the little victories. The small achievements. The baby steps. When I don’t pay attention to the noise from outside all telling me to be more positive, try and fit it, disregard my boundaries and be more acceptable to others, then I can truly have a chance at living a happier and more content life!
4 thoughts on “Defining moments”
I think it comes down to what (or who) is real. I am not unhappy not do I hurt most of the time. But I do hurt and I am unhappy some of the time. My writing reflects my changing mood and circumstances. Sometimes it is positive and happy and other times it reflects how much i hurt.
I like being real as I write. I like it when the writers I read ware also real. Give me real. Real keeps me reading any blog that I read regularly.
This is so true Trish … my illness has totally redefined my life… it dictates what I can do day to day and who , how or if I interact with others .
It has affected every area of my life and as you said, accepting that goes a long way to making living each day more productive.
If we feel forced to disregard the impact our illnesses have upon our life , it only invalidates our feelings and belittles our challenges.
You always so eloquently write exactly what’s going on inside my head .. so Thankyou for being a voice for those of us who for whatever reason don’t or can’t speak up for ourselves 🙏