the HAES® files: Health Is Not a Destination

by Health At Every Size® Blog

by Amy Herskowitz, MSc

welcome to healthIn April of 2010, I participated in a genetic study offered by the Women’s College Hospital Research Institute in collaboration with the University of Toronto, to test my DNA for two mutations in the BRCA1 gene and one mutation in the BRCA2 gene. These three mutations are more commonly found among individuals of Ashkenazi Jewish background and account for the majority of hereditary breast and ovarian cancer cases in this population. I was interested in participating in this study because my paternal grandmother died of breast cancer at the age of 35 and my maternal grandmother had breast cancer a few times in her life, despite dying of something else at the ripe age of 94. I figure it’s fairly likely that I’ll have to deal with it at some point in my life, so I thought it’d be wise to find out just how “at risk” I am, genetically.

I filled out a lengthy family history questionnaire, gave a sample of my DNA and spoke to a genetic counsellor about my building anxiety surrounding my participation in the study. Did I really want to know the cold hard truth? And what would I do if I learned that I did have one of the mutated BRCA genes? Would I change anything about how I live my life? Would I do something radical to prevent getting breast cancer? Some women do. I wondered if I would have to disclose this genetic information to potential health insurance companies. I had a lot of questions and even more apprehension as time wore on. The worst part was the waiting. The study comprised over 2,000 women of Ashkenazic Jewish descent in Ontario and I’d have to wait a year before I’d be informed of any results.

My understanding of genetics is fairly unsophisticated but I know enough to recognize that the genetic mutation alone would not seal my fate of developing cancer; something would have to encourage the expression of that mutated gene. Conversely, even with a confirmation of no mutations in my BRCA genes, I wouldn’t be guaranteed any freedom from breast or ovarian cancer in my lifetime. I know that it’s always a gamble and it’s best to play it as safely as you can when it comes to living a healthy, moderate lifestyle. I have a friend who has no family history of breast cancer and she developed it at the age of 32, had a double mastectomy and is lucky to be alive today at 38.

My year of waiting ended in June of 2011 when I got my mail and found a letter from the principal researcher and Canada Research Chair in Breast Cancer, telling me my genetic test was normal and that none of the three mutations in the BRCA genes were found in my DNA sample. The letter went on to caution me that while my negative test result means that I’m not at “very high risk” of breast or ovarian cancer, I’m still at higher risk of developing cancer than the average Canadian woman, due to my family history. In fact, my lifetime risk has been calculated to be up to 19.4% based on my current age, personal and family history. I’m not bothered by this; in fact, I was reminded of a book I recently finished (Marian Keyes’ The Other Side of the Story) where one of the characters experiences such an adrenaline rush after undergoing a few back-to-back life traumas, that she authors her own book about how grateful she feels that all the horrible things which happen to people every day didn’t happen to her today. Even though I didn’t have cancer in 2010 or any time before that, the fact that I received this piece of good news on that auspicious day in June made me grateful for my “lesser than horribly high risk” for developing it.

As an aside, when my Dad was first diagnosed with ALS, it started me worrying a lot about my own future health, since the only thing he ever complained about health-wise was his bad back. In the time after his diagnosis and his explanation of how he experienced his first onset of symptoms, I began getting anxious every time I’d have one of those muscle spasms that make your eyelids or your lip or your leg twitch. I still get pangs of anxiety when I get those twitches, whereas before we even knew of ALS, I used to enjoy those funny little spasms and think they were off-beat signs that my body was out of whack in some way. I never thought they could be signs of something more ominous. ALS doesn’t run in our family. We have no idea how or why my father developed it and died from it within 18 months of diagnosis.

My point is, with all the advances in genetic testing and what we can possibly know about our levels of “risk” for developing certain ailments, diseases or disorders, Life is still pretty much a game of probabilities. My stress and anxiety are probably the worst triggers for any of the myriad illnesses that I can develop, and worrying about every muscle twitch or whether my genes will one day turn against me and express themselves in ways that make me sick, will not help me live my life better, happier or healthier. Having come from a disordered eating background, my current “life in recovery” requires a HAES® approach to food where I absolutely refuse to restrict anything unless it causes me severe physical discomfort. The same applies for moving my body: if I am injured or sick or plain old exhausted and feel as though physical activity will not improve my wellbeing, then I do other things to nurture my body, like rest it, take it for massage therapy, physiotherapy or acupuncture treatments.

I recently had a blood test done by my naturopath to test for food sensitivities and she suggested that I avoid all the foods in my “red zone” for at least six months. That red zone area included the most common things I consume: wheat, corn and dairy. For me, applying the Health At Every Size® principles to my life means that I recognize when I’m cycling through periods of heightened stress and tension, and trust that I know my body’s signs for when it’s happy and when it is struggling. I will not be following a no-wheat/corn/dairy regimen for six months. I can, however, decrease my intake on those top three food types and see if that makes me feel better, and move on from there.

That letter I received in June of 2011 is a constant reminder for me to see things in their proper perspective: I am not sick today; I baked pastries and cleaned my apartment and did Pilates and ate food I enjoyed and didn’t get hit by a car or shot by a random bullet or struck by lightning.

Today is a good day.

Amy HerskowitzAmy Herskowitz, MSc, is a senior policy and programming consultant for the mental health and addictions sector in the Ontario provincial government who has almost 15 years experience working with the eating disorder support, treatment, research and advocacy communities in Toronto.  Amy serves as ASDAH’s Vice President and chairs the blog committee, as well as serving on the internal policy and membership committees.

13 Comments to “the HAES® files: Health Is Not a Destination”

  1. I love the last paragraph, as a survivor of physical, emotional and nutritional abuse as child, I now support other women who are going through the recovery process which I went to – via a 12 step fellowship. And one of the things I say often to them is “get a sheet of paper and a pencil and write down everything you can be grateful for in the situation you are in right now”. They often look at me as if I have lost the plot, but when they try it, and get into the habit of doing it, it makes a huge impact on their well-being. And eventually helps them to see some good things in amongst the traumatic things of their childhood.

    • Liz, I can appreciate why some people may question whether you’ve “lost the plot” as you stated, but we both know how effective a tool this can be! And not just for “seeing a silver lining” where one might not have noticed one before, but for recognizing the grace of everyday life that many of us take for granted. I am grateful and humbled to work in an area of healthcare where I am exposed to regular doses of perspective by seeing inequities and gaps in the health and social service systems that cause people and their families to struggle and/or wind up in crisis situations. It doesn’t minimize my own Life goings-on, but it really helps to contextualize my circumstances in a grander scheme, and allows me to focus on broader, more systemic problems rather than get caught up in the trivial minutiae.

      • This gratitude technique was given to me by a very elderly recovered alcoholic, who had been sober in AA longer than I had been alive. And it is an amazing gift. It is hard for other people to grasp, but once they do, it is life changing. I knew an old lady who had cataracts on her eyes, years ago before laser treatment was available. She had the first eye “peeled” and it was unsuccessful, and she went for the second eye and it was successful and she could see for the first time in many years. She devoured photo albums, people, ourselves included went to see her, everything was a wonderful answer to prayer. Day 15 post op she developed an infection and lost the eye, leaving her totally blind. And she praised God for giving her 14 days to update the images in her head of the people she loved.

  2. This is beautiful, Amy. Thanks for writing it!

  3. A wonderful piece, Amy! Having successfully had open heart surgery a few years ago, I have gratitude for every day I feel fine. Re: Risk factors–I follow the topic of safety issues as they effect people every day, and rather than dying from dramatic things like plane crashes or from an asteroid, or even a flu virus such as H1N1 (swine), I believe that people have higher health risks from everyday things like unsecured scatter rugs, poorly lit stairs, insufficiently-robust extension cords when used with electric heaters, smoking in bed, texting and other sources of distraction while driving, poor lighting during power failures, pouring fuel into hot generators, lack of grab bars in tubs, rickety ladders that should have been retired long ago, and about 100 other things that most people don’t think about. Just sayin’.

    • Bill, my late father would have deemed any “death by unsecured scatter rugs” or anything of that sort,an “ignominious way to go”. He actually used that word to describe Dr. Atkins’ death.

  4. Wonderful post Amy. Thanks for sharing your story and reminding us how important it is to appreciate and be grateful for what we have. Whenever my kids complain about something they don’t have or other kids having more (which is extremely common here in the Middle East), I always remind them that this is how Dudley Dursley (of Harry Potter fame) behaves. Nothing is ever enough for him. Seems to stop them in their tracks most times.

  5. Thanks for posting this Amy. I too suffer from some digestive issues that are probably genetic and refuse to totally eliminate certain foods from my diet. I like your perspective about eating less and seeing what your body does. I have a client who has similar issues and trying to keep HAES principles in mind in helping her navigate the “don’t eat this….or that…” is a challenge for both of us. These changes have to come from something other than a “deprivation” model. Choosing to not eat something that doesn’t feel good is your body is a different experience than saying, “don’t eat this”. Appreciating what works in our body is a much more satisfying way to live than focusing on what doesn’t work well.

  6. Amy, thanks for such a wonderful piece! One of the blessings of doing social work is the opportunity to see all the different challenges people face and how just a bit of bad luck can sometimes lead to devastating losses. Understanding this has really helped me not fall into the “if I make all the right health choices, then I’ll be healthy” fallacy. And it’s helped me appreciate the the privileges and benefits I’ve got, while I’ve got them.

    • Lisa, isn’t it amazing when you first have that revelation about how many possible alternative realities there are to a situation and that you’re not in fact, stuck with a binary of “good” or “bad”, “right” or “wrong”, “normal” or “abnormal”, etc.? I have a tendency to think in terms of binaries and I’ve only recently started to become conscious of it so that I can begin to consider alternatives and ease up on being so judgmental!

      • Exactly Amy!! I think we should all go into our doctors offices and when they want to weigh us just say no and belt out a chorus of, “I did it my weigh!!”

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