Thursday, April 16, 2015

The Intimacy of Disclosure

intimacy of disclosure life's a polyp

Today is my 4th wedding anniversary, a place and time I didn't think I would experience. As a child and teenager with an ostomy and chronic illness that embodies the "embarrassing type" of bathroom issues, I had a difficult time with self-acceptance and disclosure with others. I didn't love myself and I couldn't understand how anyone else would not only be able to love me but also support and help me unconditionally throughout my medical issues. As an adult, I see things very differently now. I have told more individuals in the last decade my story or my diagnosis and issues than I ever have previously in my life. I am better prepared to unashamedly live with an ostomy now than when I had an ostomy.

For the majority of my life I have feared rejection from others in regards to my health and at times I still struggle with this. Yet every person I have disclosed my health issues to has not cared and wished I had disclosed earlier. I remain reserved in my selection of whom to disclose my health details to as not everyone needs to know and it can be a difficult subject to breach without the proper context.

Each person handles disclosure differently. Determining what exactly you want to disclose and to whom is key. Individuals in the health groups are frequently asking about this - what do I tell, when do I tell, and whom do I tell. The answer won't be the same for every person or every situation. You must feel comfortable with your disclosure. Trust your instincts about those around you.  If you feel uncomfortable, then perhaps it isn't the right time and another time would be better for you.  I've known individuals who made public announcements to their classes and others who didn't tell anyone. Please do not let anyone try to make you feel pressured to disclose. This is your body, your health and you have every right not to disclose to someone until you are ready.

I don't recall disclosing my ostomy to others while I had an ostomy but rather afterwards, although I can't be certain of this. My method of selection was to only tell those I was very close to and to use educational segments from the videos of the Youth Rally's I attended. I would show my friends segments that showed and explained what an ostomy was and I followed this with questions to determine their reactions to an ostomy. If they reacted in an accepting manner I told them that I previously had an ostomy and shared some of my story. In romantic relationships, I never disclosed early on in the relationship and in fact, the majority of my boyfriends didn't know any details beyond I had surgery due to colon cancer. I chose to disclose to my husband after a tearful misunderstanding. I thought he was making fun of bowel issues such as diarrhea and incontinence. The correction of this misunderstanding allowed for the door to be easily opened to disclosure of my own health issues. Presently, if the context seems appropriate I simply just disclose whatever amount of information I feel comfortable disclosing with that person at that time. I've also discovered that simply answering that I have Short Bowel Syndrome is very effective in conveying information without spelling out the details that can be uncomfortable to explicitly discuss such as chronic diarrhea.

Finding someone you can be yourself with, completely comfortable and open happens in various types of relationships. For years I thought I wouldn't find such relationships - platonic or romantic. I let my fear stop me from reaching these levels of intimacy in my relationships. I experienced an incredible freeing once I allowed myself to be vulnerable enough to be completely honest about all the details of my health and allowed myself to be loved without fear and questioning the other person. The more a person can understand the more that person is able to support you. Acceptance comes in different forms whether it's full knowledge with explicit detail or implied knowledge.

Communication leads to community, that is, to understanding, intimacy and mutual valuing. - Rollo May

 I tell my husband and other close friends or family daily details that no one likely truly cares to know but they are comfortable knowing and it helps me feel supported during a bad moment or day. I don't have to hide any amount of information from them, this alone is freeing. Implied knowledge and established routines can speak volumes about your health and a person's acceptance. Frequent restroom needs, stomach rumblings, signs of pain, and cancelled or altered plans are simply things you have to deal with if you're to spend any amount of time with me. When meeting for dinner with a friend of mine from high school and her husband, it was overheard that she warned him "don't say anything about her and the restroom". I'm so accustomed to my frequent restroom excursions that I didn't realize others noticed and gained implied knowledge that my health issues required a restroom frequently although the details were not known. Yet others pick up on our behaviors and accept that as how we are without requiring details of why. It's a comforting acceptance for me; I don't need to apologize or make excuses for frequently leaving the's just the way it is and it doesn't require words.

I wish I knew then what I know now. I realize now that most adults don't care about what your health issues are, they care about you. You are not your health issues, you are a person who deserves love and care. Those in your life are drawn to you for a reason and they want to be a part of your life. As clichéd as it may be, if it bothers someone then that person isn't worth your time or energy. That person isn't ready for a true friendship or relationship. That is not your problem or issue, it is that person's issue to live with.


  1. This is a great reminder for me to focus on my husband and his support of me and my illness, not others and what they don't or can't give me. Thank you. It's hard to accept that people don't respond because they don't understand, I think being a HSP ;) has something to do with that.

    1. I think you are so right! An HSP would be more apt to implicitly understand whereas it would take more for nonHSP to understand and relate. I hadn't thought of that connection, thank you for connecting dots! :) I struggle with it too, you're definitely not alone in that.