I was diagnosed with endometriosis in 2008 at age 26, and I’ve spent a large amount of time educating myself and the public through my writing on different platforms. I am also currently a Ph.D. student in the Educational Studies in Diverse Populations program with an emphasis on Community Health Education. My research focus has largely been related to endometriosis advocacy.
As we close out Endometriosis Awareness Month, one question I often get as a patient and advocate is, “How can I help my friend/family member during their diagnosis?” I have a standard list of “do’s and don’ts” I usually give and I’d like to share them with you.
Do be a listening ear. Patients are often frustrated because endometriosis is a chronic illness (meaning that there is no cure). Symptoms will subside providing a sense of false hope, but in most cases will likely return. Patients will need a safe space to talk about their feelings and express the grief they feel when they get an unexpected flare.
Don’t say, “I thought they fixed you last time.” Surgeries can provide relief from symptoms anywhere from a few months to a few years. Remember that surgeries are a relief, not a cure.
Do encourage your patient to rest and follow treatment plans. Rest is not a luxury for a patient with chronic pain illnesses; it’s a necessity. The body does its best healing when resting. Encourage it and never shame your patient for resting. Encourage your patient to follow treatment plans if the patient is comfortable with the plan in place. Helpful little reminders can do a world of good.
Don’t “medication shame” your patient. Sometimes prescription narcotic pain relievers are the only thing that can quell the pain. When given under supervision of a physician they can help patients rest when severe pain keeps them from doing so. However, speak up if you suspect your patient is abusing them. That can be a life-saving intervention if dependency occurs. However, when doing so, come from a place of love and concern. Shaming someone is never beneficial for either party.
Do educate yourself and share. Nothing makes an endometriosis patient feel more validated than when they see their friends and family taking the time to learn and educate others. It’s common for endo patients to feel invalidated by those who see the disease as nothing more than a “bad period” or “a woman’s lot in life.” When their loved ones take the time to learn and share, it not only validates the disease as real, but lets them know they aren’t alone in the fight.
I hope these articles have been helpful. If you have any questions or need resources, feel free to contact The Blount Countian. They can put you in touch with me.