Surfacing After Silence

Life. After.

“You’re Part of the Team!”


copyright Krames Patient Education

This paragraph is courtesy of a cheesy little pamphlet called “Post-Op Pain Management: You’re Part of the Team.”  Tomorrow I am headed off to the hospital for orthoscopic knee surgery.  Same day, outpatient, so I won’t have the opportunity to mimic all of the corny drawings of the patients in the illustrations that describe a hospital stay.

I was reading over my pamphlet like a good patient, though, and this paragraph stuck out, specifically the phrase “only you know how you really feel.”

I remember one eating disorder unit on which the doctor is notorious for writing or typing during your individual sessions.  This infuriated some patients because “How am I supposed to know if he’s listening?” My answer to them was, “Ask.”  By that time in my treatment, I had no problems speaking up and asking questions and making sure the doctor heard my concerns.  This was because I had also experienced an eating disorder unit in which the patient had virtually no say in anything, from meal plans to activities to groups to individual therapy.  I sat in the day room all day long, not speaking to anyone, because staff made it very clear that they were not there to talk to us, only watch us eat.  I can’t even remember my doctor’s name or face, that’s the amount of time I spent with him.  He made no lasting impression, other than the fact that I remember he was male.

By the time I was hospitalized in 2005, I made sure my treatment team knew how I was feeling.  I asked questions, I interrupted their dismissals to say, “I have something I want to talk about,” and I had an ongoing dialogue with my treatment providers.  I cannot stress what a difference this made in my treatment.  So many other patients walked out of the doctors’ offices frustrated and angry but then would admit that they didn’t say anything.  “You didn’t say anything?” I would ask.  “Nope.  Why should I?” was a common response.

The reason why you should speak up is because no two patients are alike.  No two people develop an eating disorder for the same exact set of reasons and no two people recover in exactly the same manner.  We each experience the hell and pain of an eating disorder differently.  Yes, there are many commonalities among symptom groups and behaviors and triggers, but how each of these affect us as individuals varies from person to person.  And the doctor cannot address those unique concerns if you do not tell him or her what they are.  They are not mind-readers, however much we would like them to be.  They only have as much information as you give them.  And the more information they have, the more effectively they can help you.

I realize that being assertive is difficult for a lot of people with eating disorders.  But if you approach a session with the attitude of “why say anything?”, you can’t really complain that “he didn’t hear me.”  Of all the members of your treatment team, YOU are the most important one.  Yes, YOU.  Not the MDs, not the PhDs and not the techs or nutritionists.  They all have knowledge and experience and skill, but all of that is nothing if YOU are not an active part of your own treatment.

This does not mean dictating your treatment.  I’ve tried that: telling doctors what I will and will not do without listening to their suggestions.  This has never helped.  This does not mean slamming doors and screaming at your doctor; although s/he will certainly understand that you are angry, chances are you are not clearly communicating why you are angry, especially if you just slam a door and walk out.

This means having conversations with your treatment providers.  Telling them how you are feeling and how you are reacting to various aspects of treatments.  Tell them your fears, tell them your concerns, and ask questions.  And be willing to listen in response.  You’d be amazed at the amount of negotiation that can happen when you honestly and appropriately express yourself.  Trust me, it beats playing manipulative games and showing your doctor how you feel by engaging in symptoms.

This will mean you will need to be assertive, or, quite possibly, learn to be assertive.  One of the first ways I began effectively expressing myself with my treatment team was through writing.  I wrote down how I was feeling and I wrote down my fears and questions.  Then I handed that sheet of paper to the doctor or therapist.  I did that only two months ago with my current therapist because I was afraid I wasn’t going to get everything out if I spoke it.  I was afraid I’d forget something.  So I emailed him a copy of the letter and we had common ground to start with at our next session.  I’ve gone into doctor’s appointments with lists before.  Bulleted points of what I need to tell them and what I need to ask.  I do this with both medical and mental health professionals.  And I’ve had several doctors tell me they appreciate it because then I don’t have to call the office the next day with an, “I forgot to ask about . . .”

And, how fitting that I am writing this entry now.  My orthopedic doctor’s nurse practicioner just called to say that the head anesthesiologist does not feel comfortable doing my surgery in the orthopedic clinic because of my heart and the slim risk of me needing to be shocked during surgery.  So I need to have my surgery done in the main OR, which means I have to first see that surgeon and wait for that anesthesiologist to clear me.  It was tempting to say, “okay” and hang up the phone.  Tears were streaming down my face and I was having a difficult time speaking.  But I had two things that I thought were very important to get across: the fact that I’m averaging about three solid hours of sleep a night because of my knee and the fact that the pain gets worse on a daily basis.  I was embarrassed by my shaky voice, and apologized for it, but the nurse said not to be sorry, that I should be upset and that she’s sorry this is happening.  But she is going to talk to the doctor and tell him what is going on with my sleep and pain and will get back to me later.  It really would have been easier to not say anything and hang up the phone and let myself cry as loud as I wanted.  But by voicing my concerns, my doctor has more information about me, the patient, the one experiencing the pain.

Physical pain, emotional pain.  Either way, the doctors cannot fully help you unless they know what you are feeling.  Everyone on an eating disorder unit has an eating disorder, but each individual is feeling and thinking in their own unique, individual way.  Let the doctor know you, for you are the key to your treatment.

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June 30, 2010 - Posted by | Communication, Eating Disorders, feelings, recovery, relationships, therapy | , , , , , , , , , , ,

1 Comment »

  1. Last year, I wrote a 4 page journal and handed it over to my treatment team in IOP. That journal and what I wrote about was a major hurdle I hadn’t faced before, and it helped me a lot. I still journal and either share it during session, or give it to my therapist to read between sessions. I definitely second the journaling technique. It helps SO much to get it down on paper before you talk, and it puts you – the patient – in control.

    Comment by Jen | July 1, 2010 | Reply


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