Help Me Communicate With My Doctor – Please?

Hi dear friends and random readers (actually I think of you all as friends). Tomorrow I am paying yet another visit to my trusty urogynecologist, to be fitted with a device that may help me out a bit with my pelvic organ prolapse until I can have surgery in a few months. I was thinking I might take the following letter with me to give to her. And I would so appreciate feedback and suggestions. Be honest. It is too antagonizing? Is it too direct? Or too indirect? Should I include something else?

I can also wait and send it to her later, but maybe I should go ahead and give it to her before I chicken out. Appointment is as 10:30am Pacific time, but if you read this later and want to offer suggestions, that’s still wonderful. Thank you all for your help. Here’s the first draft.

February 1, 2016

Dear Dr. XX,

Thank you for taking the extra time to talk me about the details related to my future surgery. I don’t like all the details, but knowing them will help me make a plan to take care of myself emotionally.

While you and [nurse] have both been patient and forthcoming with me about what to expect, I get the sense that you don’t routinely have these talks with patients. So it might seem like I am unusual (or pushy or obsessive) in wanting to have these conversations. (No, you haven’t said anything like that—this is just me imagining what it might feel like on your end.)

I want to tell you a little more about why this matters to me. It’s for my own sake and for the sake of others (presumably 20 to 25 percent of your patients). I write a blog, anonymously, about the sexual abuse I experienced from childhood and into adulthood, what I am learning in therapy, and how I am working to take care of myself. I have written about my gynecological visits, what scares me about them, and what helps make it easier. What I most wanted to tell you about is the way that other women with trauma histories read and respond to my blog. They tell me that they think it’s “brave” of me to speak up to you about it at all. They say they could never bring it up with their doctor, even though it affects their experience with their doctors. Some describe doctors getting frustrated with them because a pap smear makes them break out in tears or because they leap up when a doctor takes a cervical sample for biopsy without telling them what is going to happen. Others say they are not able to go for routine gynecological care because it is too triggering for them.

I don’t know that I think it’s at all “brave” of me to speak up to you about this, but I do know it hasn’t feel easy. It’s not like I go around telling people that oh yeah, I experienced childhood sexual abuse. I didn’t tell my therapist for years, and I didn’t talk about it with my husband until we’d been married about 15 years. It’s just not easy to talk about.

That’s why I think it would be great if you and [nurse] could find a way to bring it up to patients, rather than wait for us to bring it up. Earlier I suggested you might want to use language like, “I see you checked the box about abuse history in your intake form; are there things we should consider in thinking about how we work together?” But even that is hard, because I am only gradually learning what things we need to consider; I wouldn’t have been able to answer that question the first time I saw you. Later I read an article from the American College of Obstetricians and Gynecology (http://www.acog.org/Resources-And-Publications/Committee-Opinions/Committee-on-Health-Care-for-Underserved-Women/Adult-Manifestations-of-Childhood-Sexual-Abuse) and I found they had some suggestions that were better. You may have seen them before but I’d love to share them anyway (and am sharing them with readers of my blog):

“… it is strongly recommended that all women be screened for a history of sexual abuse. Patients overwhelmingly favor universal inquiry about sexual assault because they report a reluctance to initiate a discussion of this subject. Following are some guidelines:

  • Make the question “natural.” When physicians routinely incorporate questions about possible sexual abuse, they will develop increased comfort.
  • Normalize the experience. Physicians may offer explanatory statements, such as: “About one woman in five was sexually abused as a child. Because these experiences can affect health, I ask all my patients about unwanted sexual experiences in childhood.”
  • Give the patient control over disclosure. Ask every patient about childhood abuse and rape trauma, but let her control what she says and when she says it in order to keep her emotional defenses intact.
  • If the patient reports childhood sexual abuse, ask whether she has disclosed this in the past or sought professional help. Revelations may be traumatic for the patient. Listening attentively is important because excessive reassurance may negate the patient’s pain. The obstetrician-gynecologist should consider referral to a therapist.
  • The examination may be postponed until another visit. Once the patient is ready for an examination, questions about whether any parts of the breast or pelvic examination cause emotional or physical discomfort should be asked.
  • If the physician suspects abuse, but the patient does not disclose it, the obstetrician-gynecologist should remain open and reassuring. Patients may bring up the subject at a later visit if they have developed trust in the obstetrician-gynecologist. Not asking about sexual abuse may give tacit support to the survivor’s belief that abuse does not matter or does not have medical relevance and the opportunity for intervention is lost.”

I’m glad I have a couple of months to think and prepare before my surgery. I can already tell you, based on your description the other day, that there are some things about it that set off my emotional alarm bells, including

  • Being strapped to the table and being literally paralyzed by the anesthesia
  • Having a breathing tube (or anything) stuck down my throat
  • Having a catheter or other things inserted inside of me
  • Having a lot of gauze inside of me
  • Having floor nurses checking/poking at my vagina
  • The possibility of having to go home with the catheter and keep it all weekend
  • Having anyone do anything to me that I don’t know is coming, particularly anything involving touch to my mouth, vagina, or rectum

I want to have the surgery done, so I will work to cope with all of these challenges the best I can. I very much appreciate your understanding and support. I am especially grateful that you said you could help to communicate my wishes to the hospital staff who will work with me after the surgery. I hope you will find ways to extend that same understanding and support to other patients who might not be ready to tell you how much and why different procedures can freak them out. I am sure it’s hard to figure out what we all need, but I can tell you for sure that we appreciate your efforts.

Sincerely,

Q.

23 thoughts on “Help Me Communicate With My Doctor – Please?

  1. One thing that might be worth rewording is “I want to tell you a little more about why I am making this into a big deal.” to:
    This is a serious concern for me and according to statistics, 1 out of the 4 women you see…
    You are teaching me how to take care of myself. Thank you!

    Liked by 2 people

  2. This is great! The only thing I would nitpick is the same point Grace made: You are not making this into a big deal; it IS a big deal. I love that you advocated for yourself without pointing fingers or making assumptions about where they’re coming from, and also that you included the lengthy quote from their very own regulatory body (including the helpful link). Very well done, and I believe this will be taken seriously.

    Would it be okay if I reblogged this? It’s such a lovely example of how to do it! (But no problem if not!)

    Like

  3. It’s a good letter. I think one thing that might be helpful would be to look for a rape/sexual assault crisis center in your area and include their contact info in the event they need a resource, have further questions or would like to bring someone out for a more in-depth staff training. I work in healthcare and even though it’s just eyecare, most of us have little more than a high school education with, frankly, limited and highly specific training. Dealing with someone with something like extreme OCD, for instance is incredibly challenging for some of our staff. I can’t even imagine how uncomfortable they would be dealing with sexual abuse trauma. Hell, even your doctor has probably only had about 8 hours of training on the subject! And even then, back when she was in medical school. I know what it’s like to live with sexual abuse trauma, and while it’s frustrating and triggering at times, it helps me a bit when people are uncomfortable or unsure of how to respond to me because at least not everyone has had the same experiences as me. It’s comforting that others haven’t lived such a traumatic life, in a way. Assuming they’re trying. And it sounds like your doctor and her staff really ARE trying to help you. They’re just maybe not sure how to act. Hugs!

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    • Yes, I do think they have good will but don’t know how to act. However, given that their job is immensely triggering for many of their patients, I can’t help thinking they have the responsibility to develop a little more skill. It has been SO awkward and challenging, and if I weren’t trying so incredibly hard to take better care of myself, I could easily have dropped the whole thing.

      Liked by 1 person

  4. I love that you mentioned “excessive reassurance” and very specific ways in which you are triggered. It’s a very effective what-to-do/what-not-to-do list.
    I love that the letter is your way of taking control in a diplomatic way. The first thing people notice is tone. It’s not a bossy tone, it’s assertive.

    If I genuinely need something from someone I often phrase it like:
    “I need you to…”

    For example in your case,

    I need you to give me a heads up before you touch me or insert anything in my vagina”

    There’s no confusion in that case. You’ve told them explicitly what you need without being “bossy” or “bitchy” so there’s no excuses.

    Abrazote xx

    Liked by 1 person

  5. I am also going to write a letter for hospital staff and will use the language you suggest. I will have a whole list for them too–I want my door closed, I need you to knock before you come in. I need you to tell me what you are going to do before you touch me. Etc.

    Like

  6. Reblogged this on Barking Back and commented:
    Q over at Le Quemada (Believe the Girl) wrote this amazing letter to give to her doctor about how her experiences of abuse mediate her experiences with gynecological health care. It is a very powerful letter and I feel strongly that in writing this, she is speaking for many of us abuse survivors, as well as providing an amazing model for how we can advocate for ourselves and each other when dealing with the medical system. Please take the time to read this and think about how this might work for you (if you’re a survivor), and what you can do to understand and support survivors (if you haven’t experienced this yourself). Be aware that some of this is quite explicit, so if you’re not in a space to read about specific triggers, maybe come back later instead.

    Please join me in wishing Q all the very best with her upcoming procedures, and a swift and complete recovery!

    Liked by 2 people

  7. I missed your cut-off time, and don’t have really anything specific to add. Except, I am really impressed with you, Q. For not letting this just drop. I admire your tenacity here. Hope it went well today. Perhaps if more people were able to speak up as you did today/this past week, the healthcare system could shift in a more positive and healing direction for trauma survivors.

    Like

    • I took the letter with me to the appointment today, and once there, I considered not giving it to her. But then I thought, well, I already told everyone here I would. And I didn’t want to let anyone down. So I gave it to her. I’ll be curious to see if she ever says anything about it.

      Liked by 1 person

    • Thanks… still feeling a little uneasy about giving it to her, but I’m hopeful that it was a good move. I was thinking that if she reacts well, I actually should give a similar letter to my primary care physician. I haven’t talked to her about any of this either.

      Liked by 1 person

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