May of us cringe when we hear “victim blaming.” It happens often to make us feel better. somehow we are able to convince ourselves that that horrid crime, often domestic violence or assault happened because of what the victim was doing. Somehow this can make people feel safer, like it can’t happen to them. I never quite understood.
This week I have been thinking that “patient blaming” is just as real. It can come from a doctor, a family member, an acquaintance or even a friend. In my estimation “patient blaming” has decimated my spirit more times than I can count.
We saw a doctor on July 1 for the AVM in Meghan’s thigh. She was supposed to be “the best,” a term I know is used too loosely. She is a hematologist who many years ago prescribed an off label drug that quieted the AVM in Meghan’s knee for a good stretch of time. There was a GI bleed that hospitalized her about 8 months after. Maybe it was the drug. Maybe it wasn’t. We can’t seem to keep a doctor on the team long enough to have a long term understanding. However, it definitely worked to quiet the AVM because almost 6 months to the calendar after the medication was stopped, the AVM had a bleed of it’s own and left us with Thanksgiving week surgery.
This doctor knew we were coming to seek another drug being used off label for AVMs in our population. She took basic information via MyChart and seemed eager to help. We got the scan. We saw her. She spent a good hunk of time analyzing and criticizing Meghan’s regimen of prescriptions and vitamins. I asked her which ones she would cut. She had no answer, but used that medication list to tell us that there was no way Meghan could take the drug we sought.
I told her that in the absence of a solid multidisciplinary team I took us through every highway and backstreet alley in this city to get my kid functional. I worked with many doctors and put together a combination of prescriptions and vitamins that had allowed my kid to complete school with a full college scholarship, and be an athlete and community leader. She was unaffected. And, she told us that Meghan would not be a drug candidate prior to reviewing the MRI/MRA as she “does not read scans” and the report from our AM visit was not up that PM. She also made sure to tell us rare disease patients are “a lot of work.”
That evening she sent a message with articles cited for PTEN screening. NOTHING more.
But the report came up on 7/2, and I viewed it alongside the images. And I still want to talk to someone about the drug. I sent her a message on 7/3- no reply. NOTHING.
Ten days passed and I did this…
This morning we had this exchange…
Now, I had to maintain my manners, but I just about lost it. “I just sent generic guidelines???”
And WHAT exactly would you suggest we do next? How are you feeling about the report. What does it say to you?
I waited weeks for that appointment. I timed it right after school ended for the year. And again, a waste of time.
Time after time this scenario plays out.
I have lost count of the number of doctors we have seen that have come with promises of being “the best.” I have scheduled, and rescheduled. I have driven hours. I have spent ridiculous sums of money on tolls and parking. I would do it all a million times, but sometimes the feeling you are in the hamster wheel is all you have.
There is no one who knows me who would consciously say I have been anything less than a mouthy and stellar advocate for my girl.
Yet, inevitably this is where the “patient blaming” finds it’s way across the lips, of the doctors who can’t help, of those I love, and those I just tolerate.
“Why are you on all those medications?”
“Does it really hurt ALL the time?”
“Well, did you try doctor ____ in _____? They are THE BEST.”
“I took my child to _____ and that is the only person I would ever trust.”
“Everyone has pain.”
“You asked THEM? WHY?”
“What did you do differently today?”
Sometimes it is subtle. Sometimes people don’t even realize it. Other times, I’m not as sure.
Do people realize we are all doing the best we can?
Do they realize we have jobs? And insurance restrictions? And children who NEED for their mental health to have LIVES that do not FULLY revolve around waiting for doctors who MAY care enough…??
Do they realize even when we call, after HOURS on the phone, sorting out all of the above, that it may be MONTHS before our jobs, which allow for the insurance to pay for these exams can free us? Because there is NEVER EVER one issue at a time.
We are all juggling spears. All the time. There is no rest.
We are 11 appointments in over the last 2 weeks. We are far from through with the summer cram.
There is no place in my world for patient blaming. There is no place for parent/ caretaker blaming.
We in the Rare Disease Community must build each other up. And know when to speak.
- Is it true?
- Is it necessary or helpful?
- Is it kind?
And as Grandma used to say, maybe if it isn’t we should just keep still.
My whole heart and soul is with a Cowden’s sister across the globe. The desire to wrap my arms around her in a giant hug is so strong. She has done all she could for her daughter. And despite all that, it may just not be enough.
Sometimes there is no one to blame. Sometimes it is scary. Sometimes it is close to your heart.
Lead with love.
If we don’t help each other – no one will.
So, we pray. We research. We learn. We rest. We pray. We seek balance.
We remain #beatingcowdens
beatingcowdens 