Abby Norman / Author
Optimizing treatment: Talking to your doctor
Patient Awareness Day
The Lifecycle of Endometriosis: From Diagnosis to Coping with Disease
Sunday April 17, 2016
Lenox Hill Hospital, Einhorn Auditorium
Thank you so much. I am really thrilled to be here and I would like to just thank Dr. Reich for inviting me. My name is Abby Norman and I am not a doctor. I might have been but my education was interrupted about five years ago by endometriosis and I have spent the last five years trying to learn everything that I can about it as a patient and also as a journalist. The book sort of came out of that. It will be coming out I think, hopefully next year. It is being published by Nation Books. Since I am a writer it would make sense for me to start will an allegory.
If you are familiar with Plato’s allegory of The Cave, the idea is, well, you cannot see it, but I can read it to you. There are prisoners that are sitting in a dark cave and they are chained so that they can only stare straight ahead at a blank wall. Behind them there is a fire and it creates shadows and it casts shadows on the wall. The problem is is that the people who are looking at the wall can only make inferences about what is behind them based on looking at the shadow. That is kind of, for me anyway in my mind, what is has been like to have symptoms of endometriosis that were constantly being misdiagnosed as something else by physicians that I was seeing.
There is this idea that when we try to articulate and communicate our pain or our gastrointestinal symptoms or what have you, however it presents for you, being able to find an established vocabulary that you can use, not just to talk to doctors but to also talk to the people in your life, which is something that I guess I have been trying to hone for myself over the last couple of years.
I do not know if any of you who are patients have ever used the McGill Pain Questionnaire. This is something that I have never been offered in a clinical setting, this image here on the right. It is something that I found because I googled like pain scales that do not suck because I was really frustrated that whenever I would go to a doctor they would try to like quantify my pain by using a numerical scale. Now this is actually a comic by Allie Brosh, you might be familiar with her work. Usually you go to the doctor or if you are in an emergency room setting as I have been many times in the last five or six years it is always presented on a scale of one to ten and the problem with that is that pain is subjective and we are all going to experience different types of pain and our emotional experience is also going to be influenced by that.
The McGill Pain Questionnaire actually asks you to use different adjectives to describe your pain, not just in terms of the duration but the qualities of the pain. Is it gnawing, is it aching, is it burning, is it throbbing or stabbing? I have used this just on a personal level to try to expand my vocabulary in terms of talking to other people and specifically talking to medical professionals about what my experience of pain has been like.
In the clinical setting, in an emergency room, wherever you might be there are often barriers to communicating well. First of all, if you are in pain it impacts your ability to think and speak clearly. It makes you exhausted to be in chronic pain and I do not think I have to tell that to most of you in this room. The emotions, the sadness, the fear, anger and depression of having some kind of chronic condition for which you constantly cannot get answers, in time, if you are in an emergency room, or even if you are at a scheduled doctor’s appointment the visits are short and they are often dictated more on their monetary value than they are actually addressing what your concerns are. Sometimes it is hard to even keep appointments when you are struggling with pain. There are often these barriers that we have to try to overcome both on the clinical side and for us as patients.
Now, one thing that I have been doing this year is I started a website and it is hosted on Medium. I take first person essays and I interview women about their uteruses. So it is actually called askmeaboutmyuterus.com. We also have a twitter chat. A lot of women have submitted pieces, not just about endometriosis but miscarriage, infertility, pregnancy experiences, menopause and I have talked to women all over the world about what their experience is menstrually. I took a sampling of the first person essays that women have written about their experiences with endometriosis and these are the words that show up the most frequently. I am sure most of them are not surprising but the one that really stood out to me was Time, how much time we have invested in trying to get a diagnosis, how much Time we have invested in trying to learn how to live with this condition, to explain it to the people in our lives.
One thing I was thinking is what does it mean when I talk to a professional, a health care professional about time? For me personally at least ten days out of the month I am incapacitated, which basically for me means I make a very small journey between my bed and the bathtub and that is pretty much the extent of my day. In the last five years that I have been dealing with this that is about 14,000 hours of my life that I have lost. I turned 25 last week so by the time I turn 30 if it continues on this trend I will have lost 288,000 hours of my life to endometriosis.
My question, on a more philosophical level, not what am I going to do about this or how can I learn to live like this or how can I explain it to the people in my life; my question now, knowing that I have this and knowing that there are so many people and people here today who are really trying to find answers, still my question is what could I have done with that time?
I would like to thank you all so much it is a real pleasure to be here. Certainly if you would like to be part of the network that I am a part of you can also (http://askmeaboutmyuterus.com), I know it is kind of a somber note to end things on, so I wanted to provide a picture of my really cute dog. Thank you so much.