Being a breast cancer patient has tested both my physical and emotional privacy. Although I have no alternative frame of reference, being a psychologist with breast cancer has added another precarious layer of tricky boundary issues.

The physical exposure is obvious but I don’t think most people, unless they have been pregnant or have had a serious medical issue, can fully appreciate it. You’re asked to be naked all of the time or in the case of a breast cancer patient, half-naked all of the time. You get handled, prodded, squished, injected with radiation, pierced with needles and wires, sliced open, and flooded with chemical warfare. I’ve met so many O.R. nurses while climbing onto an operating table in a flimsy gown, only seeing the hazy outline of their faces because I am so near sighted without my glasses. During four surgeries, while unconscious, adhesive electrodes were placed on the front and back of my torso. A part of every first shower following surgery was finding one or two that were left behind. In addition to the bandages, drains, and incisions, this was another reminder of the way my body was cut, pasted, and manipulated while I was unconscious.

Emotionally, I have been vulnerable and scared in front of so many strangers, wonderful strangers, the healthcare providers from whom I have received my assessment and treatment. Many of them are strangers no more but there are a number of folks whom I’ve met only once.  Walking in with my husband to the Swedish Cancer Institute for the first time, just my being there broadcasted the very private information that I had cancer. Before I even handed over my insurance card or gave the patient coordinator my name, she knew that I have cancer because I was at the Women’s Cancer Clinic. Everyone in the waiting room knew, too, if they happen to notice me. The second scariest thing about my life (told you, parenting is scarier), a very private matter was revealed to so many whether I wanted it to be or not.

As you know, I am child/adolescent psychologist with a private practice. At the time of my diagnosis I was booked out for three months. I didn’t know my treatment plan except that I would have at least one surgery and probably take tamoxifen. I didn’t know whether I would have radiation treatment or chemotherapy. I knew very little about the logistics of my life and how they would impact my practice.

I don’t know about you, but if I wait three months for a doctor’s appointment, I don’t really like it to be cancelled at the last minute. And I particularly wouldn’t want to reschedule for another couple of months only for it to be cancelled again. I figured that the families of my patients would feel the same and if I appeared to flake out on them, not only would the needed services be delayed, but my reputation could be harmed. I am a small business owner. A bad reputation threatens my livelihood.

After talking with my colleagues in my psychologist consulting group, I decided that I needed to tell the parents of my patients something. (As an aside, this group, along with my own psychologist, helped me continually assess whether my illness or the stress surrounding it were significantly impacting my competence, in which case I would have to transfer all or a portion of my caseload, as is required by law.) I initially decided to tell the parents that I had “a serious but treatable medical issue.” I tried this a couple of times and the acute anxiety in the faces of the parents was rather distressing to me. So I ended up telling parents that I had breast cancer, a very good prognosis, and as much detail about how it would impact my schedule as I knew. That actually worked a lot better. Fearing that some parents would under-report issues to avoid burdening me, I also told them that they had to tell me if they were not able to get from me what they needed so that I could refer them elsewhere.  Since I do a lot of assessment, it meant telling people I’d not even met about my health. I wanted to them a chance to schedule with someone else if they didn’t want to take the chance that I would be unavailable. Fortunately, out of about 18 assessments, I only needed to refer one family. I was able to carry off all of the others, many of them during the month between my diagnosis and my first surgery. As a frame of reference, for the type of assessments I do, completing two per week is considered a lot and I was writing about three reports per week during that month. (I’m getting a little off topic but I am kind of amazed that I was able to pull that off.)

And sometimes the physical lack of privacy crossed into my experience with parents of patients. Guess what? Some of the parents of my patients work in hospitals, my hospital. And one of them works in one of the pre-op areas where I hung out in a flimsy hospital gown, sometimes with my ass hanging out and other times mercifully clothed in a pair of hospital pj bottoms. And that person was really nice about it, allowed me as much dignity as possible, gave me a hug before each surgery, and gave me extra pillows.

So how did I deal with having my ass hanging out, literally and figuratively? As for the physical privacy, although I am somewhat modest, I knew I had no choice and got over it. When nurses, physicians, or technicians apologized to me about the discomfort of procedures, I just said, “I know you are trying to help me. Just do what you need to do.”

In my practice, I learned to deal with inquiries about my health with appreciation and a short and positively worded reply. The only time I initiated the subject was when I had an upcoming surgery that would impact scheduling or require a long absence. When parents emailed me during my medical leaves inquiring about my health,  I gave them a short and positively worded reply sometimes followed by the statement, “Now I am going to take a nap” just in case there was any question that I was not available for clinical consultation.

Although I believe that I have navigated all of this quite well, the lack of privacy has gotten me too used to not having it. I also share much of my inner life on this blog and for the most part, I navigate the privacy boundary in a way that may not be comfortable for everyone but that is comfortable for me as well as for my husband. And I have reaped so many benefits from my blog. I have met incredible people and become part of a powerfully supportive community. And I wouldn’t have them if I hadn’t written about my experience, sometimes in intimate detail. But sometimes I wonder if I disclose too much on my blog. Other times I know I disclose too much about my thoughts and feelings to friends and acquaintances. For example, I believe I have told a substantial portion of my life story to the new psychologist that joined our office a few weeks ago. She still likes me and is pretty chatty herself. But still, this is not the way I want to conduct my life, spilling my guts, every 10 minutes.

In another one of my “duh moments” I realize that I can’t keep acting as if everyone is entitled to and interested in hearing my life story, just because an incredibly scary part of my life, my breast cancer, is out in the open. The parents of my patients needed information and reassurance. I’ve told my healthcare providers, “Do what you need to do.” And that course of action worked for the most part. But I am at a different stage in this process, one that allows for more privacy than I am currently allowing myself to have.

How do I keep my boundaries in check? What is my touchstone? Although my life is more settled it is still very intense. The positives and the negatives stand out in sharp relief. What keeps me grounded while I experience a technicolor world with the bluest sky, the strongest joy, the most heartfelt gratitude, love that is surrounded by birds and flowers, and the scary cliffs of opportunity or ruin?

Your own touchstone may be different. I think mine is a question, which must first be answered before any additional questions are posed or actions are taken.

“Elizabeth, what do YOU need?”