I had an amazing experience at the EndoWhat New England Premiere. I felt so grateful to be a small part of such an incredible, unprecedented event. This event was driven by Nicole Pearlstein, an impassioned endometriosis and adenomyosis patient who is fighting to educate other patients so that they do not suffer like she did. She is also fighting for awareness and better treatment options in honor of her teenage daughter who was recently diagnosed with endometriosis and adenomyosis.
Together with her husband David and Dr. Malcom Mackenzie, an excision specialist in Cambridge, Massachusetts, Nicole put together a viewing Shannon Cohn's groundbreaking "Endowhat" documentary at Gillette Stadium. The film was followed by an exceptional educational program presented by advocates and specialists from around the country. The event ended with an empowering march around the football field. I was inspired by all of the patients and loved ones who came to the event. There were so many passionate advocates that gave me hope that together we can make a change.
I had the honor of presenting on how endometriosis can impact relationships from a mental health perspective. I was humbled to be speaking along side, Josh the husband of Jacquie, a patient who has struggled with severe endometriosis. Josh is also battling a very serious chronic illness himself. He spoke from the heart with love, empathy and wisdom. When the videos from the event are published, patients who weren't there will be able to hear the incredible things Josh had to say. In the meantime, some of my patients have been asking for my talk, so I thought I would publish what I wrote. Check back later for the video feeds to all of the wonderful presenters, to include Dr. Ken Sinervo, Dr. Malcom Mackenzie, Heather Guidone and Dr. Sallie Sarrel.
Corrosive Effect of Chronic Pain on Relationships
We all know that endometriosis is physically invasive, but the reality is, endometriosis invades all aspects of our lives. Many patients experience the debilitating symptoms of endometriosis from the start of menstruation through menopause. This means that patients can spend up to 40 years of their lives dealing with a painful, chronic disease. Being in physical crisis for so many years has a profound impact on not only the relationships patients have with others, but most importantly, it can affect the way patients feel about themselves.
Patients and loved ones who are here today know that endometriosis is pervasive and can have a significant impact on the family unit, school experience, the ability to acquire and maintain employment, friendships and of course romantic relationships.
Endometriosis can be an isolating disease and patients desperately need a positive, healthy support system to thrive. When endometriosis patients do not feel supported in a relationship, tension starts to develop within that relationship. While there could be many reasons for a lack of support, I think it is important to understand on a sociological level why other diseases and illnesses rouse more compassion and support than endometriosis does at this time.
We all know there is a lack of awareness for this disease. Too many people still do not understand what we mean when we say we have endometriosis is the same way that they understand breast cancer or diabetes. The burden of proof is on the endometriosis patient to explain and sometimes even try and convince emergency room staff, employers and even family members that their symptoms are real and that their pain is real. This is exhausting and discouraging for patients.
There is a collective, intuitive social knowing of what to do when we hear a loved one has breast cancer and is undergoing chemo, or if your nephew has his tonsils out or even if you knew your elderly neighbor had the flu. We as a community know how to appropriately rally around the individual or family unit in their time of need. Part of why this doesn’t happen for endometriosis patients is the lack of awareness, but I also think it is because there is a still a social taboo around women’s periods and reproductive health issues. The breast cancer advocacy community did a phenomenal job removing social taboos so that now businesses, politicians and even football players will rally around patient health care needs. We have a lot of work to do to raise the awareness and understanding of endometriosis in society.
I know this is seems a bit bleak! 40 years of pain that no one understands! There is hope and ways to make change to strengthen support and relationships.
I love Ghandi’s quote, “Be the change you want to see in the world.” Change starts as an inner journey for patients. I work with patients to accept that they have a chronic illness that causes pain and fatigue. This is a really hard process that is an ongoing challenge. Endometriosis patients are fierce and determined. We don’t want to be sick! But, coming ot terms with endometriosis and all that comes with it helps patients to become advocates for their own needs within their different psychosocial systems, family, school work ect…
Next, patients have the exhausting task of educating those around them. Kudos to patients who brought their loved ones today and kudos to the loved ones that came! Loved ones, KEEP coming to events, check out some of the amazing resources online , including the CEC website which was mentioned already as well as the online private support groups.
And the work doesn’t end there. It is one thing to know something on an intellectual level, but we have these pesky feeling that complicate matters. I encourage patients, as well as their loved ones, to go talk to a mental health professional for support.
One reason to go seek extra support is that having a chronic illness is a loss. For some patients who struggle with infertility on top of endometriosis, there is even more to grieve. But, parents and spouses of patients also suffer loss. It is incredibly difficult to watch your teenager struggle with such a debilitating disease. For spouses, there may be the challenge of fertility as well, but there is also social isolation, caretaker fatigue, loss of intimacy and maybe even an extra financial burden on the relationship.
Another reason to seek support is that we all have defense mechanisms that we are not aware of. Some of these coping strategies may be causing undue stress on your loved one who is already carrying the burden of endometriosis. Ask yourself these questions: How do you react when you are fearful or anxious? How do you react when you feel fearful or powerless? Do you get angry or defensive? Do you try to control the situation? Are you a doer? Are you a diehard optimist? Do your coping mechanisms support the patient or cause more tension?
Also, it is important for both patients and loved ones to examine which biases and coping strategies were taught to them growing up. When you were little and got really hurt, were you told to shake it off? Were you allowed to take time to be sick? Did you have good role models for self-care? Endometriosis patients not only need to be allowed to be sick, but they need to make rest and self-care a priority. Patients need to learn to be their own advocates for self-care, but they need loved ones to support and encourage these needs within the family unit.
I want to take the time to thank all of the health care professionals who came today. Your relationships with your patients have a significant impact on their physical and emotional wellbeing. How you treat your patients and their pain can directly affect their self-image and self-esteem. That is why it is vital that you are also aware of your own defense mechanisms and your own biases.
As a patient myself and as a mental health provider for patients, I know intimately the frustrations of the disease. I can only imagine that treating endometriosis as a physical is also difficult and frustrating. There is a reason why “enigma” is in the title of today’s event. I am sure treating this disease can leave you feeling helpless and powerless. How do you react to feeling helpless? When this disease makes you feel unsure or maybe even inadequate at times, how do you react? DO you get angry or defensive? DO you have a hard time referring out or asking for another opinion when you have exhausted all the options you are aware of? Can you admit it when you have made a mistake? Do you have any biases towards or patients in chronic pain?
These are tough, yet essential questions to reflect on. The more self-aware you are, the more capable you will be at providing a strong support system for endometriosis patients.
In closing, I truly believe that healthy relationships with others starts with a healthy relationship with ourselves and an acceptance of our disease. When we love and accept ourselves we are less likely to get hurt by others who don’t understand. I tell my patients to try and “excise” all of the unhealthy relationships out of their lives and in doing so it will reduce stress and inflammation!
I want you to take a look at this beautiful woman! Can you tell that last night she was in the emergency room because of endometriosis. Absolutely not!
Now take a look at her. Many patients feel like barbed wire is wrapped around their pelvis.
If doctors, nurses and other healthcare professionals saw this patient, would they tell her that her pain isn’t real?
If Teachers and School Administrators saw this young woman, would they admonish her for not handing in a paper on time or not being able to participate in gym class?
Spouses, take a look at this woman. Do you think her inability to be intimate with you has to do with her not being attracted to you or that she doesn’t love you? No, it is because she is in horrific pain.
Now patients, if you were friends with this woman, this woman with the barbed wire strangling her pelvis, would you berate her for falling asleep after a long day at work and missing the party? Would you shame her for not doing the dishes or keeping her house clean? Would you make her feel less than for gaining weight?
Absolutely not! You would have compassion and show empathy. You would be kind. Patients, you need to be kind to yourself. Sometimes the voice inside our heads is the worst critic. So if there is anything you take away from today is to be kind to yourself, be gentle with yourself and do not tolerate anything less from those around you.