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Why patients need to be their top advocates

As the year ends, I reflect back on what has been a tough time medically for me—and not just because of my chronic myeloid leukemia diagnosis. It has been eight years of CML—full of ups and downs and side effects, I get that.

But compounding that was emergency gall bladder surgery, loss of mobility, COVID, and numerous other “outside” medical issues. Unfortunately, with all of these things happening simultaneously, I feel like I’ve been lost in a maze, a shuffle. And I’m still trying to get out.

Is it just me or are the breakdowns in the “system,” especially bad in the wake of COVID? I understand understaffing, etc., however, there comes a point where somebody somewhere needs to do his/her job in order to help the vulnerable, the patient.

Caught in a maze of referrals

For example, nearly two months ago and one month ago, respectively, my doctors put in “referrals,” so that I could get appointments scheduled with gastroenterology and neurology. Let's just say the reasons for these referrals are urgent.

I get that things take time. But after a while, I question why I haven’t received a call yet to at least schedule said appointments. We all know to actually GET the appointments will take additional months.

So far as what I was told, yes, the referrals were made and put on a “list,” and whoever the next person is in the system has not picked up the ball.

Someone dropped the ball

What now?

Seriously, I’ve spent the past two years calling and emailing in these situations to see if they can put another referral in or see where it stands. Each time this has happened, there is another delay of a few months. However, if I hadn’t taken the initiative to keep pushing, nothing would have been done at all.

I must be my own advocate

What I have learned or had reinforced this past year is that patients must be their own advocates. It’s almost a full-time job. In addition to pushing for follow through on referrals, I’ve also run into issues with test results not relayed to me in a timely fashion.

Yes, they appear online in my chart and yes, I’ve stayed up at night trying to look at MRI pictures and figure out what is going on. But other than googling terminology, I’m at a loss. It should not be up to me to play doctor and do guesswork anyway.

After a while, I’m compelled to call and email to ask for test results and their interpretations from actual medical people. I am as patient as I can be, but eventually the span of wait time becomes ridiculous.

What if there is some horrible tumor or issue that needs to be addressed ASAP? I wouldn’t know unless I keep pushing and asking. It’s exhausting.

Which brings me to a general way we can be our own advocates. Ask questions.

Always ask questions

There is so much going on right now, I don’t even know where to begin. So, I start with questions about blood work. What does it mean? Why is something high or low? What should be done about it? What's the plan or next step?

It’s also important to be your own advocate with those around you. For the sake of your mental health, try to explain reality to people whenever appropriate and whenever you can. Holding things in has been detrimental, at least for me, so I try, whenever suitable, to “tell it like it is.”

I grow weary of people regarding blood cancer as an ailment like a tooth ache or an inconvenience when it is a lot more than that. This past year has taught me that sometimes CML is one of many things impacting my life. My only choice is to keep prevailing, keep fighting and somehow find a way out of this maze.

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