I thought I had my life
But as my friend once told me,
“Life rarely goes as planned.”
I used to be healthy,
But now I am not.
I used to go to university,
And now I go to doctor’s appointments.
I used to look forward to the future,
And now I often dread it.
A year ago,
I wrote a poem called “The Uncertainty of Not Knowing”
About my unexplained health symptoms,
And I guess I am more certain now
Than I was before —
After hundreds of doctor’s appointments
And three hospitalizations
And countless phone calls to insurance,
I have found a name for the conditions I have.
And I enjoy having diagnoses -
Enjoy having a name
For the pain, the fear, the isolation,
For the lack of my life as it was before.
But with these labels comes also the fear of uncertainty
That continues to plague me every day —
The uncertainty of not knowing
When and how and if
I will get better;
Of not knowing
How I will manage school or a career;
Of not knowing
If I will develop more symptoms,
Of not knowing
If I will know how to proceed
If I do;
The list goes on and on.
And the worst part is,
It’s so **ing hard to talk about it;
I don’t know anyone with my health conditions;
Don’t know how to convey
My fear, my frustration, my isolation, my regret
To my acquaintances, my family, my friends.
I read narratives of people going through similar things,
But many are far older and far sicker
Than I am, and when I see their stories
I fear for what I might experience in the future.
My friends post about their sports injuries
On social media,
And I think it’s great -
Great that they feel comfortable
Sharing the parts of their lives
That are not just food and fun times with family
And travels around the world;
Great that they can get support
And inspiration from others.
But I do not post about my illnesses
Because I do not feel comfortable telling the people
Who knew me when I was completely healthy
How I have changed;
Worry that future employers
Will discriminate against someone
With conditions that may never be fully cured;
Do not want to be “the sick girl,”
The girl with mental illness,
The girl with chronic pain;
Do not want my illnesses or my disabilities to define me,
Even though sometimes I feel defined by them.
Life with multiple chronic conditions
But I know I am strong,
And I need to keep fighting -
To keep self-advocating
When doctors tell me different things
Or minimize my pain;
To reach out
Even if people might not truly understand,
And continue to find a community
Of those who do;
To search for answers in appointments
And comfort in company
And purpose in pain -
Purpose that drives me
To help others
Going through the same thing.
There is so much uncertainty
In my life,
But part of life
Is to exist in a state of not knowing.
And I must take solace in the realization
That however hard it gets,
I am not just “the sick girl.”
I am not the sum of my suffering.
I am not locked into a life of pain.
I am not living a life without purpose.
And I am not going to give up.
Dealing with unexplained symptoms and multiple physical and mental health conditions is rough, but I am very lucky to have a great support system of family and friends, and to live near excellent medical care. If you are going though something similar, I feel for you and wish you all the best.