This month’s topic for the Patients for a Moment blog carnival is “getting the attention you need”, especially the medical attention that you need as a chronic patient.

Barbara at In Sickness As In Health explains that she takes her husband with her to appointments. That seems to get male doctors’ attentions (though not female doctors), but it also gives her an extra layer of support. Someone else gets to do the remembering, the telling, the thinking.

Rhiann Jones at My Brain Lesion and Me gives us a list of suggestions for tackling medical appointments. Lydia Hendry at A Path through the Valley offers another list of ideas. Take notes. Be assertive. Are you writing this down??

Duncan Cross admits that he’s gone to some extremes to get the attention he needs from doctors. Now he just uses the dreaded phrase “suicide ideation” to get their attention and prevent them from ever prescribing the “miracle drug” again. (Right there with you Duncan.) It’s what some other folks called “brutal honesty”.

Rachel Tanner at Fluted Cups and Ampersands admits that you can’t always get what you want, but that one of the things that chronic patients want besides getting attention from medical professionals is for ordinary people in their life to care!! Just because we have an illness doesn’t mean that we become superhuman and don’t need friends just like everyone else.

A few folks got inspired by the prompt and ran with it. While these posts interpret “attention” differently, I think they are helpful to give us a bigger view of what’s going on here. After all, that’s usually the problem we have with medical professionals (or just our friends). They only see the convenient facts.

Emma at Your Doctor’s Wife explains that even she can’t get Dr. H’s attention and she’s married to him!! She’s fallen and wound up seeing stars, a situation that could be considered a medical emergency. Nothing happened. No Superhero Dr. H coming to the rescue. Isn’t that supposed to be the whole point of having an in-house medical expert?? While her story is somewhat hilarious (if you’re not Emma), it does highlight the importance of knowing a person’s vocabulary and being willing to speak their language.

Lydia points out in her post that if you listen to someone, they’re more likely to listen to you. I’ve discovered that principle as well. It’s easy to forget that doctors are people as well, but that change in attitude can be helpful if you want to be seen as a person!!

AfternoonNapper points out that there are multiple ways of advocating for patients and for getting certain types of attention. She writes about Regina Holliday and her art project ‘The Walking Gallery’. “The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits…. This “walking wall” of 200 individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts…. They are providing a patient voice, and by doing so, are changing the conversation.” The whole idea is so cool, and it’s something I hadn’t thought about when it comes to getting the attention I need for my very specific situation: the power of community! If you’re creative, community can really push for change, for much needed change, in a way that no one person can.

All in all, it’s a tough topic. It’s something chronic patients face every day. But I’m encouraged that the response from everyone is not just to wither in frustration and berate “the system” that works against us. People have strategies, and they keep trying. And, we eventually do find help. Maybe not exactly the way we want or from the people we expected to give it, but we do get what we need. eventually. There are ways to be proactive. And if it makes us better people, better citizens, better sons and daughters, in the mean time, I guess I can’t complain too much.

Abigail Cashelle

Edited to add a late submission: Tonja at the Pink Doberman adds her own perspective of living with a traumatic brain injury and getting the help that she needs.


3 thoughts on “PFAM June 2013: Getting the Attention You Need

  1. I have had my own difficulties getting doctors to listen to me. When I had my first gall bladder attack and went to the ER, they thought I was having a heart attack – at age 34. I didn’t know the difference, of course, and the tests showed no heart problems so they just gave me something to sleep and sent me home – with no diagnosis! After speaking with my mother, a nurse, the following day as well as my doctor’s office, I was scheduled for an ultrasound test on my gall bladder for the following week. However I had another attack before that appt. In the ER once again, I had to tell the dr. on staff that I had a gall bladder ultrasound scheduled and to send for a technician right then to get one done. When he seemed hesitant, I had to get upset before he would finally agree to the test. Sure enough, the ultrasound showed that I needed immediate surgery to remove my gall bladder.
    Again in 2011, after being transported to the hospital in an ambulance following a car accident, I was complaining of HEAD pain. The nurse kept telling me that surely I meant my neck and they sent me for neck X-rays. I still kept insisting that I had hit my head in the accident, but no one would listen. After living with a debilitating headache for over a week, I finally was able to get an appt with a neurologist and get relief AND an MRI. Turns out I had sustained a concussion in the accident – but no one would listen to my complaints.

  2. I thought this must just be a local thing? Honestly, I’ve been so absorbed in trying to keep track of appts, what was said, that I finally put it all in a letter! I handed it to my GP and from then on, I take my hubby for most of the appts. I think that my doctor is frankly confused with my varied and complex set of issues that no diagnosis is coming my way. I will read all of the links you’ve been so helpful to share. Thanks again, carli


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