Why You Need Backup When Talking To Doctors

Rob looks like a doctor...
Image by juhansonin via Flickr

It’s been a fun year so far for me: X-rays, MRIs, steroids, a cane, even a walker. My left hip is a mess, and a surgeon wants me to replace it, now.

While I have been resisting, the bone has gotten damaged, so next month (right after vacation) I’ll start a drug to repair it, putting me on crutches for three months. No more softball this season.

There have been many days I feel overwhelmed by it all. I need backup.

The sweetie has — as anyone living with, and caring for, someone with chronic illness or injury knows — put up with a lot. I walk like a drunken sailor and awaken many nights at 3:00 a.m. with pain. So he decided to take my health into his hands and, while I’m a continent away on vacation visiting family and friends, called my doc, a man often ferocious and intimidating.

But my guy is, too when necessary; we have a meeting for all three of us in two weeks.

The sweetie wondered if he’d overstepped his bounds. I was surprised the doctor spoke to him, but I am relieved and grateful as hell that I now have backup, someone else in the room while the multi-syllabic words pour forth.

When you’re sick or injured and in pain and scared, it’s damn hard to hear clearly and remember everything. I got the news about the latest hip  issue while standing alone in the baggage claim area of Vancouver airport. I was shocked, overwhelmed, tried not to cry in public. (When I learned that my Mom [now fine] needed neurosurgery for a brain tumor, I was standing in an Ohio field with 3,000 shooters behind me in competition. Bad news shows up everywhere.)

This week, it was my turn — as my Mom’s only child, albeit living on the opposite side of North America and in another country — to advocate for her. We went to see her internist so I could find out what she’s doing for my Mom (or not.)

My Mom lives in Canada, and it’s a different game; doctors are busy and some tests and procedures harder to get or get quickly. You can’t push Canadian doctors as hard as Americans because there’s no profit motive driving them to behave better, or avoid a lawsuit.

It was an interesting meeting — it could not have lasted more than 15 minutes. It was tough to cover that much territory so quickly. It went as well as one could hope, but there’s much left to do and to follow up.

Have you acted as someone’s medical advocate? Or had one?

Did it help?

11 thoughts on “Why You Need Backup When Talking To Doctors

  1. citifieddoug

    My staff act as medical advocates all the time. (Which means I have mostly second hand stories.) It was easier before the Health Information Privacy and Portability Act (HIPPA) passed. Now, “I can’t talk to you about this. You know, HIPPA and all.” is a real easy excuse.

  2. leonkelly

    My wife intervened when I wanted to wait until our son finished his soccer season to get my Birmingham hip. Her position: “Do it now” and quit suffering. Turns out, our son broke his leg early in the season (tibia snapped behind the shin guard). He and I spent the early autumn together on crutches. Clickity-click!
    As one of your most admiring readers, I urge you to toss the stop gap measures aside, and consider the Birmingham device before the ball goes out of round too far. When that happens, the Birmingham device is a no go, and the full hip is the only available option. Reality bites. Your softball career is gonna have to end soon any way. Besides, it’s a dangerous game. Bicycling is a breeze. Gonna go riding tonight!

  3. Caitlin Kelly

    Doug, thanks for the good wishes…the hip, as my doc loves to keep reminding me, is well and truly screwed anyway…as leon knows, this is a stopgap measure.

    leon, I have had too many docs and surgeries and just want (she whined) one damn year without either a surgery or endless rehab. I will (thank you for the info) discuss the Birmingham option with the doc. You know that whatever I get won’t last forever so the game is to wait as long as I can.

    I have a new book I’ve just finished to revise and then promote; these two all-important things have come at exactly the same time. The book really needs to come first. I only have so much energy.

  4. What a brilliant idea! I think I will see if my S/O can go with me to the rheumatologist next month. He can attest to my nights of pain, aching hands and wrists, and general malaise and moodiness because I feel like crap quite often. Sometimes I feel like the doctor just doesn’t believe me.

    I can’t blame them though. I used to think people with fibromyalgia were doofy, too. Then it happened to me. I wanted it to be rheumatoid arthritis so bad because that’s “real” and something provable in bloodwork. It wasn’t, and now I have this disease that you don’t see. But I feel it everyday, and I live with it, and so does my family. Doctors don’t get it, I don’t think, because they don’t see it. I think more people -should- take an advocate with them, especially when they hurt, because it’s another voice.

    Keep us posted about your health as well as your mom’s.

  5. john

    As I’ve come to know how bull-headed you can be about things I’d only say this: At your age, you have the ability to get this fixed and put behind you for many useful years. The alternative is to literally limp along and run the risk of turning this into a much more debilitating predicament. As risk-reward problems go, this one is a no-brainer for most people. Nothing is more important than your health, not the book, not what’s fair, not having one year off from rehab. You can say that the book promotion comes first, or make up some other lame excuse, but just realize that at a certain point, and it reads like you are already there, going in for repairs is more about prevention than treatment. If you fell right now, it would likely be pretty catastrophic. That little catch we do when we slip on something is not something you an do in your state, is it? I side with leonkelly and say get it done, you’re taking a risk that makes no sense.

  6. Caitlin Kelly

    Bull-headed? Moi?

    Believe me, this is a conversation I and my partner are having with the doctor in a week…who has made very, very clear how fragile my hip is and will be while on medication. This is a new, crappy development we only caught with the latest MRI and only thanks to my massage therapist’s wisdom and advice.

    I need this book to succeed in a major way, financially which, right now, this month, demands a lot of my time to whip it into shape. I need to be healthy and strong. These two needs are suddenly in direct conflict at the moment. I am not someone who tiptoes through life and any limitation is challenging, as this is right now. Once I get a much clearer idea how much time and energy I would lose to rehab, the better I can figure this surgery out. The idea scares me to death. I think that has to be understandable.

    Suzanna, go! I went yesterday with my Mom and I know my presence and direct questions lit a fire beneath the doctor to take some new and specific actions. She is now accountable to more than one person.

  7. michaelcarragher

    An advocate is essential in these situations. I can speak from experience that having a family member, spouse, or someone you truly trust with you will only improve your care. They have to push the GP or specialist when you cannot.
    I suffered from a fairly rare heart condition ten years ago. Without my parents intervention I am not certain that I would have made it. Doctors seem to want to treat the symptoms, and not the underlying problem. It is hard to think clearly when you are very ill, let alone critique your care.

  8. Caitlin Kelly

    Michael, thanks. I also credit my massage therapist for alerting me to the fact he thought my pain anomalous…and it was.

  9. annlindenmuth

    5 years ago my husband was diagnosed with diabetes, congestive heart failure, and chronic kidney failure all because he had ignored his diabetic symptoms for 10 years; and because even tho we were working 3 jobs between the 2 of us we had no health insurance; and finally, because even tho the VA knew he had diabetes dating back to 1995 they did nothing to notify us.

    He went to the first 2 appointments at the local VA hospital but when I asked him what the dr had said he just mumbled something and said he didn’t want to discuss it. So I started going to every appointment with him — mainly so I knew firsthand what was really happening, but also so that he knew I cared and had his back, and finally, because I figured having a witness wouldn’t be a bad thing if things didn’t go the way they should.

    I was there the day the kidney specialist said that it was time to put the fistula in his wrist for dialysis. I was there the day another dr told him he had prostate cancer. I was there the day he fell and broke his hip. He was there the day our house burned to the ground, and he’s here in the brand-new house right this minute!

    It’s a privilege to live with someone who has your back, and allows you to have theirs — aren’t we lucky? 🙂

  10. Caitlin Kelly

    ann, good for you. I think some people don’t want to act as backup — it’s scary, it can be overwhelming, they don’t like to confront a medical professional, they don’t understand the language….but I know that you simply tune out when you’re scared. I do.

    A former friend of mine — a Phd, i.e. highly educated — had a notebook *filled* with all the necessary data when she was getting her cancer treatment, not only because it was so much to remember but because she also got “chemo brain” and could not remember stuff anyway.

    I am currently visiting my Mom and am really fed up of people assuming “someone” is there to make her do stuff or follow up. There is no one. I do when I am here — once a year.

    I was there when my sweetie got some stuff he had to face as well; this is in direct contrast to my first husband (a dr. of course) who wouldn’t allow me anywhere near his doctor meetings or PT — and left the marriage as soon as he was healthy again. Nice!

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