Navigating the Language of Endometriosis

Updated: Apr 23

By Barbara Poczyniak, R.Ac

How do words shape the energy around a medical condition? It’s been 17 years since my endometriosis was diagnosed, after what seemed like a lifetime of trying to figure out what was going on with me. Although by now I’ve “figured out” how to stay well and live with endo, the language and negative imagery around it still resurface on a regular basis… only this time I hear it with many of the patients I treat.

The Words of Others

As March is Endometriosis Awareness Month, I wanted to explore the language often used around this often misunderstood disease. Words are powerful. I know the words of others will often stay with my patients, and they may even internalize them.

How does language influence our outlook about a diagnosis? How does it affect our emotions about our health? It happens around us all the time, and not just with endometriosis but with many other situations in healthcare. We are told certain words or ideas around an illness, treatment or recovery and we – perhaps unwittingly – make it part of our own story.

Although I can’t repeat any of the words I hear from my patients – I can still recall some choice statements from the early days of my own endo diagnosis.

  1. “It could be cancer, but we’ll wait for the test results” – said the family doctor, at what seemed like my 1000th emergency appointment.

  2. “Getting pregnant will be hard” – said the same family doctor, after initial scans suggested endometriosis.

  3. “You have a frozen pelvis” – said the first specialist looking at my MRI, although the second specialist saw nothing of the sort.

  4. “My mom’s friend has endometriosis, it’s really not that bad” – said a close friend (yeah, it was bad).

  5. “What did you do for this to happen?” – said a family member.

These all sound pretty terrible to me, even years later. And none of these words helped me actually deal with my problem. Thinking about it now, I understand that most people just did not know what else to say to me back then. But they did not know that their choice of words was crucial. It certainly affected how I felt at the time. I get that the words my patients hear may also be affecting them strongly.

Words as Part of the Treatment

Studies have shown that the language of healthcare practitioners can actually work as a placebo or as the opposite – a nocebo. Words can influence the effectiveness of recovery from a surgery for instance. A doctor suggesting the surgery will be straightforward with an easy recovery may actually influence how well it turns out for you. A doctor guesstimating that you’ll need IVF to get pregnant might set you up for only that story.

Choice of words does matter. In fact, it has been shown that just meaningful communication between a patient and therapist can be of great therapeutic value. A 2014 study focused on chronic back pain, and studied patients who received standard treatment with minimal communication, sham treatments, only conversation or treatment plus engaged conversation with their therapists. The study showed that the group that received just engaged conversation with their therapists had better results than the group receiving standard treatment. The best results were seen by the group that got both treatment and engaged conversation. So, it turns out our bodies are listening.

What language are you hearing and repeating around your diagnosis? If it is necessary medical information, evaluate it, take note but then keep it neutral. Ask questions, get the facts, dig deeper, and get second opinions if you need to. There is almost always more than one approach available to you. But protect yourself from careless words if you have to.

What are careless words? They are not necessarily meant to be hurtful. Know that some physicians do not have many options for treating endometriosis, usually just pain meds, birth control or referral to a specialist. Their choice of language often implies their lack of options. Even some experienced specialists do not have the best bedside manner, although they may be excellent surgeons and mean well. This may come across as a brusque or uncaring demeanor.

It’s often harder when careless words are personal. If a friend says something meant to “comfort you” that actually upsets you, hear that and then let it go. That speaker probably has no idea of what you are going through, or may have had a completely different experience herself.

Our Own Painful Words

I cringe now when I see endo-related posts that say ‘I hate my uterus’. I’m not denying the pain and frustration of the women posting this on social media. They may be half-joking, and probably do hate endometriosis by this point… but it makes me wonder what else those words are doing.

What messages are being received in the mind and body when we read (and ultimately believe) those painful words? As every good hypnotist knows, repeating words and imagery is one way to get yourself to firmly believe in something. Don’t let negative words become images ingrained in your mind.

“Thought is energy – it is the most potent form of energy” – Bob Proctor

There is a huge endo community online that can be supportive and a great source of information. But know that endometriosis is different for every woman. One person’s experience will not be your experience. One person’s results or lack of results with a medication or special diet will not be your results. One person’s negative outcome may not be your outcome. Often the more we read, hear and internalize, the more those negative and limiting words ring true. Thoughts and ideas become images, all the more firmly embedded in our hardwiring.

Choosing Our Words

After all this time, I’ve realized that the most important thing is NOT what the others are saying, even if it can so easily influence our emotions and expectations. The most important thing is how we talk to ourselves about our own health. What thoughts and words we ultimately CHOOSE to allow in. Where do you seek out ideas and advice? How do you talk to yourself about endometriosis? About your uterus? Your fertility? About healthy possibilities for the future? Are the words about feeling helpless and futile? Or about feeling hopeful and powerful? Only you know, and only you get to decide.

What’s next?

If you are looking for support for symptoms of endometriosis, are trying to get pregnant or just want to explore a more holistic approach, request a Meet & Greet with Barbara Poczyniak, R.Ac. She is a Registered Acupuncturist with a special focus on Women’s Health, as well as a Practitioner of the Arvigo Techniques of Mayan Abdominal Therapy.

References:

  1. Huddleston, Peggy; Prepare for Surgery, Heal Faster: A Guide for Mind-Body Techniques, 2012, https://www.healfaster.com

  2. Ofri, Danielle; The Conversation Placebo, NYTimes, 2017

  3. Enhanced therapeutic alliance modulates pain intensity and muscle pain sensitivity in patients with chronic low back pain: an experimental controlled study; 2014 J. Fuentes, PT, MScRS, PhD, Department of Physical Therapy, Faculty of Rehabilitation Medicine, University of Alberta, 3-48 Corbett Hall, Edmonton, Alberta, Canada T6G 2G4, and Department of Physical Therapy, Catholic University of Maule, Talca, Chile. https://pubmed.ncbi.nlm.nih.gov/24309616/

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