an open letter to physicians, physical therapists, counselors, and anyone else who helps care for me

From my LiveJournal

Dear caregiver,

I respect you.  I really do — you’ve worked long and hard to earn the privilege (and humility) of helping those who are hurting and in need of help.  You’ve had to take specialized schooling and practical training.  You see patients all day long, and I know it can be a drain to be constantly confronted with the pain and misery of others, especially when there isn’t any way to fix it.  You have to worry about regulations, licensing, liability insurance, malpractice insurance, arcane rules of your patients’ health insurance, managing your office, filing all the paperwork, having 15-minute appointment windows to cover 30 minutes worth of care-giving, and trying not to run too late with your appointments for the day.  I get that.

I deal with a lot of stress in my job, too.  You may not realize that each person who comes to see you has his or her own drains and worries.  I’m not able to pick my children up from school because I’m coming to see you, and if we run too late, then I’m going to miss a meeting at work, as well.  I’m worrying about the balance in my Flexible Spending Account, how much my prescriptions are going to cost this month, whether my insurance company is going to deny my claims, and how I’m going to continue to work when my body just isn’t up to it any more.  As a Little Person, I am subjecting my body to all kinds of stress and pain, just by sitting in your waiting room!

Now, I have an inherited condition, and it has resulted in chronic pain.  It’s a fairly rare condition, but nowhere near as rare as your medical school textbooks made it out to be.  Because this is inherited and chronic, I know it can never be fixed, only managed.  I get that, too.  I don’t expect a magic wand or a silver bullet.  What I do expect is to be treated with respect and dignity, just as I treat you.  I expect to be listened to.  I expect to be part of the process of caring for me, not merely a passive bystander in my own care.  I don’t want to be labeled a drug-seeker or a complainer or a problem patient; I don’t even take narcotics, for God’s sake!  I expect you — as the expert and the professional in care-giving — to do some research into my condition, to learn about how it can affect people.  Believe me, I do lots of research on my own, because so often I end up having to educate my caregivers.  I shouldn’t have to do this, but I can understand it.

So here’s the deal.  I choose to come to you for care, to hire you as part of my care-giving team.  It’s a two-way street.  I, and my health insurance company, am paying you to help me.  I am, in essence, your customer.  I also give you complete honesty, open communication, and dedication to the care plan we have established and agreed to.  In return, I expect you to genuinely listen to me, to be completely honest with me — yes, even when that honesty means giving bad news — to communicate openly with me, and to discuss with me the care plan you are proposing, so that we can engage in conversation about what’s working, what’s not working, and what new or different things we might try.

You have a right to refuse to accept my business.  I understand that.  I expect that if you choose to sever our relationship, that you will honestly and openly communicate with me, rather than engaging in passive aggression or other games.  I expect that you will tell me how I have failed to meet your expectations and needs as your patient and customer.

Similarly, I have the right to refuse your service, to fire you from my care-giving team and hire someone else.  I do not choose this path lightly, because you have become my partner in caring for me, and we have developed a relationship over time.  I value that relationship, that history.  I value our partnership.  I value the honesty, communication, knowledge, experience, compassion, respect, and time that you have given to me.  But I will not tolerate a pattern of disrespect or abuse.  I will not tolerate mind games.  I will not tolerate being treated as less than a full partner and participant in my care.

Are you still interested in this position?  Can we work together?  If so, then welcome to the team!

Respectfully yours,


6 thoughts on “an open letter to physicians, physical therapists, counselors, and anyone else who helps care for me

  1. Standing up applauding! Ok… in my head at least. At this late hour, wouldn’t want the family hearing hard evidence that I am truly nuts, ha, ha. Very well written and well… I’m just in awe! I should print out a copy and mail it to the quacks er… uh… doctors I’m seeing! Encore! Encore!


  2. P.S. If this is your first thought when you see me, then you’re probably not the doctor for me. I know I need to lose weight, and that this will help my levels of pain.

    Key quote:Seelaus’s nurse made a classic diagnostic error, according to Groopman. “It’s called attribution, because your thinking is colored by a stereotype and you attribute the entire clinical picture to that stereo­type. Because obesity can cause so many health problems, it’s very easy to blame a variety of complaints, from knee pain to breathing troubles, on a patient’s weight. That’s why doctors — and patients — need to constantly ask, ‘What else could this be?’ ”

    There aren’t statistics on how many diagnostic errors are due to weight, but the data for the general population is disturbing enough. “Doctors make mistakes in diagnosing 10 to 15 percent of all patients, and in half of those cases it causes real harm,” Groopman says. Based on anecdotal evidence — patients who’ve told her that their doctors are often too quick to blame symptoms on weight — Rebecca Puhl, Ph.D., director of Research and Weight Stigma Initiatives at the Rudd Center for Food Policy and Obesity at Yale University, suspects that being heavy could further increase the odds of being misdiagnosed.

    I also need your help in coming to a place where I have the personal resources and energy to devote to the work of changing those deep-seated habits… time after time, I find that chronic pain; acute pain from the subluxations, sprains, and other injuries an EDS patient is prone to; and the profound fatigue frustrate me. So help me find ways to have the strength and energy to prepare meals for myself. Help me find ways to get in some exercise that is unlikely to injure my fragile joints.

    I come to you for the things I can’t do all by myself. I ask for your help and support — and even pay you for it! — to be a partner and companion on the road as I journey through this condition.

    I know you can’t take it away. I know it frustrates you that you can’t “fix” me. But did you realize that it actually is more harmful to your chronic patients when you bottle up or hide this frustration, so that it comes out in subtle and damaging ways? We end up feeling rejected, abandoned, even betrayed. Just try saying those words to us sometime; believe me, we’ll understand — we’re every bit as frustrated as you!

    (H/T to tammyrenee for the link)


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