The Queen of Optimism

Does an angel have to speak for me to get a diagnosis?

I’m haunted by something I heard about today.  A man killed himself after struggling five years with an undiagnosed illness.

Suicide is always incredibly sad.  To know that someone feels so alone.  No one wants to feel alone.  No one wants to go through pain and feel like there is nowhere to turn for help and no one to talk to.  It’s a decision made in response to a lack of hope for a better day.

To know that at least one person has taken their life mainly due to circumstances related to their frustration in finding a diagnosis and dealing with an illness. Uh, my chest hurts.  How many other people in the world are suffering in this way right this moment?

If my experience is any indication, my guess is that many, many people are suffering not only with their illness(es) but the lack of a diagnosis.  As a person with an undiagnosed problem that is visible (impairs my ability to walk) I am suffering.  In my geographic area, there are no known supports available for the undiagnosed.  My insurance covers only 50% of psychological counseling sessions and the approved providers are simply awful.

Today is an example of just some of the deep frustration an undiagnosed person experiences.

1.  Tomorrow, I have an appointment with my primary care doctor.  I have to prepare myself very well so that I can catch up with her in my allotted 10 minutes (per my HMO insurance) and accomplish something.  Will I request a test for the MuSK antibody?  Should I talk to her about what’s going on at Physical therapy?

2.  I want to leave my current physical therapy center.  What seemed like a great situation is turning out not so well.  Why?

• For one, the physical therapist is there rarely and “assistants” handle patients but these are not trained physical therapy assistants.  I didn’t realize this at first until I had more interaction.
• The assistants are convinced I am improving and are crediting the PT center with helping me to improve – “Your posture has really improved” (I never had a posture problem that I am aware of) and “Your gait is much better” (The AFO makes a poor gait pattern almost an impossibility – they did not order the AFO for me.)  Additionally, by nature my problem is and always has been transient.  My abilities go from ok to awful to not too shabby without warning.  This is my 9th session and in comparision with my last center, I’ve made the same amount of progress.  Which to the last center is zero.
• One of the assistants told me my angel talked to her angel and my angel said I have a pinched nerve.  Yes, you read that correctly.

For some of my friends and my husband, the suggested angel to angel communication is enough reason to split but I feel like I will be a quitter.  This is what being undiagnosed does.  It leaves you questioning yourself, your decisions, your sanity.  You feel like you might not be trying hard enough or that you’re not doing enough to help yourself.

I need to do what I can to ensure that I never feel as alone as the undiagnosed man who took his life.  I think this means I need to reach out more to others.  I try to keep my health problems under wraps and maybe it’s time for me to be more forthcoming.  Even if this means that some people may choose to turn away.

Filed under: Uncategorized Tagged: | autoim, undiagnosed chronic illness