Then why am I on the verge of tears?
I have been working on this blog for a week and still can’t find the words I need? I keep getting stuck in a whirlwind of emotions.
I don’t know how to begin….
I don’t know where to start….
I don’t know what to say….
Do I just list the symptoms I’ve had or have?
Do I share the symptoms I’ve never confided to anyone?
Do I share the times I was in a life or death situation because I assumed my symptoms were “just” Ankylosing Spondylitis?
Do I tell how many times I’ve repeated my symptoms over and over; STILL no one listens, maybe they do, but no one HEARS ME?
Do I tell about the doctors who told me my symptoms made no sense, it must all be in my head?
Do I tell about the doctors who “seen” my symptoms, but had no idea how to help me?
Do I tell about the doctors who acknowledged my symptoms, suggesting that I learn to live with it?
Do I tell about the doctors who were appalled by the symptoms I suffered from but judged me when I was unable to “deal with it?”
Do I tell about the doctor who abandoned me when I needed her the most?
Dr. A was my doctor during my young adulthood. She was a wonderful and kind lady; I felt that I would be her patient till my life ended or hers. I was her patient for twenty-three years and when it became apparent that my “symptoms” (Ankylosing Spondylitis) was going to change my life drastically and challenge her medical knowledge. She decided to do something.
I went in for a visit and was struggling with pneumonia, she sat across from me the same way she had for twenty-three years and said…… I can no longer be your physician. I can not deal with the challenges I (her) will have to face.
I just want to finish my career quietly, and smoothly. I don’t want the responsibility and work that it would require of me to be your physician. What Ankylosing Spondylitis hadn’t managed to destroy of me, she did in that fifteen minute conversation. I told her that I didn’t get this disease on purpose to make her life hard. I told her that I would pray every day for her to be in my shoes at this very moment one time in her life.
Do I share I was forever changed as a human being that day?
Do I confess that nine years later I’m still cautious when sharing my symptoms for fear of being abandoned?
Did you know I can’t tell you which symptoms I have are from Ankylosing Spondylitis or not?
Did you know that my Ankylosing Spondylitis doctor can’t tell me that either?
Did you know that the most devastating symptom I have from Ankylosing Spondylitis is a broken heart?
Did you know fear is the hardest symptom of Ankylosing Spondylitis I deal with?
Do I share that I asked my family to list the cause of death on my headstone as Ankylosing Spondylitis, because I still want to raise awareness after I am gone?
Now I know why I was in tears. I still feel the pain, shame, hurt, and devastation of every single symptom I ever had and tried to share.
Did you know that it took thirty-two years of tears, begging, screaming and pleading for someone to finally realize I had Ankylosing Spondylitis?
Now I know why writing these blogs is important to me,
because as long as we continue to keep ourselves unheard,
Ankylosing Spondylitis will continue to be an invisible disease.
Dedicated to The ASer’s
Who Walked Before Me
Who Walk Beside Me
Who Will Walk After Me.
I don’t know how to begin….
I don’t know where to start….
I don’t know what to say….
Do I just list the symptoms I’ve had or have?
Do I share the symptoms I’ve never confided to anyone?
Do I share the times I was in a life or death situation because I assumed my symptoms were “just” Ankylosing Spondylitis?
Do I tell how many times I’ve repeated my symptoms over and over; STILL no one listens, maybe they do, but no one HEARS ME?
Do I tell about the doctors who told me my symptoms made no sense, it must all be in my head?
Do I tell about the doctors who “seen” my symptoms, but had no idea how to help me?
Do I tell about the doctors who acknowledged my symptoms, suggesting that I learn to live with it?
Do I tell about the doctors who were appalled by the symptoms I suffered from but judged me when I was unable to “deal with it?”
Do I tell about the doctor who abandoned me when I needed her the most?
Dr. A was my doctor during my young adulthood. She was a wonderful and kind lady; I felt that I would be her patient till my life ended or hers. I was her patient for twenty-three years and when it became apparent that my “symptoms” (Ankylosing Spondylitis) was going to change my life drastically and challenge her medical knowledge. She decided to do something.
I went in for a visit and was struggling with pneumonia, she sat across from me the same way she had for twenty-three years and said…… I can no longer be your physician. I can not deal with the challenges I (her) will have to face.
I just want to finish my career quietly, and smoothly. I don’t want the responsibility and work that it would require of me to be your physician. What Ankylosing Spondylitis hadn’t managed to destroy of me, she did in that fifteen minute conversation. I told her that I didn’t get this disease on purpose to make her life hard. I told her that I would pray every day for her to be in my shoes at this very moment one time in her life.
Do I share I was forever changed as a human being that day?
Do I confess that nine years later I’m still cautious when sharing my symptoms for fear of being abandoned?
Did you know I can’t tell you which symptoms I have are from Ankylosing Spondylitis or not?
Did you know that my Ankylosing Spondylitis doctor can’t tell me that either?
Did you know that the most devastating symptom I have from Ankylosing Spondylitis is a broken heart?
Did you know fear is the hardest symptom of Ankylosing Spondylitis I deal with?
Do I share that I asked my family to list the cause of death on my headstone as Ankylosing Spondylitis, because I still want to raise awareness after I am gone?
Now I know why I was in tears. I still feel the pain, shame, hurt, and devastation of every single symptom I ever had and tried to share.
Did you know that it took thirty-two years of tears, begging, screaming and pleading for someone to finally realize I had Ankylosing Spondylitis?
Now I know why writing these blogs is important to me,
because as long as we continue to keep ourselves unheard,
Ankylosing Spondylitis will continue to be an invisible disease.
Dedicated to The ASer’s
Who Walked Before Me
Who Walk Beside Me
Who Will Walk After Me.
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