Everyone has a story

22-07-13 Everyone has a story

Dealing with my illness, day in and day out for several years, has made me somewhat of an expert. Unfortunately, when it comes to making decisions about my care, I am sometimes the forgotten party.

Managing my illness includes weekly intravenous immunoglobulin (IVIG) treatments. These treatments, which each take about four hours, help keep me healthy by building my immune system.

 Years of testing and treatments have left my veins too fragile for intravenous by needle, so I have a port (portacath), which gives my providers easy access for my treatments. Last December, I got a clot in my port. Because it’s such an important part of my regular treatments, I was put on the list to have a new one put in.

After a few months with no word about my surgery date (I think I was forgotten about), I asked my doctor to kickstart the process, and I was contacted to book the procedure.

I had to decline the first date the scheduler offered me. I knew none of my family members would be available that day, and because of the complexities of my care, I need to make sure someone is with me post-surgery.

She offered me a second date. As I reviewed my calendar, I realized that I had a dental appointment that day, and told the scheduler that wouldn’t work either. Unfortunately, being sick means I need many appointments. My schedule is full of them.

 Apparently, this upset the clerk. It was obvious by her tone when she advised me to rebook my dental appointment because, in her words, “those are easy to reschedule”.

Unfortunately for me, this is not the case at all. I have an anaphylactic allergy to latex, so my dentist needs to make special arrangements for my visit. My appointment had been booked months ahead so the dentist could prepare a safe environment for me.

The scheduler didn’t seem to care about my issues.  It must have been frustrating her that I wasn’t readily accepting the dates she was offering me – not just once, but twice. Her response was, “Everyone has a story.” (I swear I could hear her roll her eyes over the phone) And then she proceeded to advise me that I would be moved to the bottom of the waiting list if I did not accept the date she had offered me for my surgery.

At this point, I didn’t react rudely, but I was definitely annoyed.  I worried, not only about myself, but about other patients who encounter the same type of situation. What happens if they do not speak up for themselves?

I did speak up.  I went to the main schedule manager and told my story. I was eventually heard. A surgery date that worked for me was found.

I don’t expect an apology. Although the manager of scheduling did apologize for what I endured, I do still wonder about the scheduler’s comment: ” Everyone has a story.”

She’s right. Everyone does have a story. It is our stories that make us people first, before we are patients.

This video that I posted previously is a great reminder: Even when our stories go untold, they deserve to be considered and respected.

I’m sure the scheduler encounters difficulties every day, trying to work around the various commitments of patients and providers to book procedures.

I’m sure that she sometimes encounters frustrating situations and behaviour.

I’m sure she has good days and bad days, in her position.

I’m sure that either she, or one of her family members or friends, has had a medical procedure.

I’m sure that she too, has a story.

It’s too bad that mine was so easily dismissed.

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