By Arielle Denise Dance, M. A. in Women’s Health

In life we, as women, take many journeys: the journey through education, career decisions, through relationships and family transitions. Throughout all these journeys there has been someone (or more than one person) who has supported us, encouraged us and held our hand through the process. Some of these journeys presented obstacles and hurdles we did not expArielle Danceect and made us grateful for people within our support systems.

 

For millions of women living with endometriosis, the incurable and painful disease that occurs when tissue from the uterus is found in other places of the body, a new journey is required of them and their support system. This journey is unexpected for most and can cause a shift in many of their relationships, and friendships.

A Walk in Her Shoes

Let’s put ourselves in the position of a woman living with endometriosis. You’ve recently had your first surgery that diagnosed you with endometriosis. Your parents stayed with you in the hospital and took notes on everything the doctor said. They looked up terms like “endometrioma”, “ovarian cyst” and “infertility”. Your parents brought you home and catered to your every need; being patient as you absorbed the news of being diagnosed with a disease you weren’t very familiar with. As you absorbed the reality of this disease you became overwhelmed and angry, you often misplaced your anger and geared it towards your parents. They never blamed you for this hostility but became concerned that you were not coping well.

Your gynecologist recommended taking Lupron shots that put you through a menopause-like state (causing mood swings, hot flashes and a host of other side effects). You began this treatment plan, praying for a cure for an incurable disease. Your partner (boyfriend or girlfriend) has been very supportive throughout your journey (even before this pain was labeled) but because of the hormones in your medicine you are moody and bleeding irregularly. You aren’t up for company tonight and wish your partner would stop being so clingy.

Your best friend kept calling and asked what she can do to help you before the fall term resumes. You didn’t want to hurt her feelings but you weren’t in the mood to talk to anyone. You kept replaying the nights she took you to the hospital for the unexplained cramps and vomiting and the nights she’d stay up with you as you cried about your pain. You were grateful for her support but then you remembered her saying “It’s just cramps. Get over it, girl. We all get them.”; you continued to ignore her calls.

Consider: How do your partner, parents and best friend feel— angry, frustrated, helpless? What sacrifices are they making for you–financial, emotional, time? Those around you are impacted by your actions (this is known for someone even without a chronic illness). How you treat people is very important… especially those who care about you and are willing to support you.

Let’s continue. You returned to school, where you are studying dramatic arts. You soon realized that your body is not quite what it used to be and you get tired quicker, experience abdominal pain when you stand for too long and have trouble focusing in class. You’re worried that these new post-operative symptoms will put you behind in your school work. But what do you do? Should you tell your professors or consider taking time off? Friends and professors ask if you’re alright and are concerned about the shift in your behavior. You want to talk to someone but you do not want to be judged and are not up for explaining this complicated disease to those around you.

Consider: When should you disclose to someone that you have a chronic illness? When is it necessary and when is it merely voluntary? Knowing your resources is essential. For example, on a college campus utilizing the Office of Disability Services could be your saving grace in a situation like this. Although you may not consider your disease disabling, the office can help communicate with professors for accommodations and extensions. But remember, you are not obligated to share your medical information with anyone until you feel comfortable or it is medically necessary.

 

Consideration and Learning

What have we learned from this brief moment in the shoes of a woman living with endometriosis? We recognize that sharing health information is private and often takes time. Having endometriosis puts women in a constant position to educate those around her. Sometimes she will educate friends, family, strangers or even medical providers who aren’t as aware of the disease. Although the discussion is difficult to have at times, speaking openly about endometriosis and pelvic pain may help someone in your life.

We recognize that loved ones who support the woman with endometriosis can be impacted by the disease as well. For those in a support system there is a strong desire to help and care for the person who is suffering. Unfortunately, allowing others to take care of us and support us is something many women struggle with (even those without a chronic illness). Being able to communicate with loved ones about how you feel (physically and emotionally) can help them care for you the way you want. Let them know what hurts, how you’d prefer to be cared for and let them know they are appreciated.

 

More Information

For a more intensive understanding on how endometriosis can impact adult relationships and family planning, see Arielle’s video blog entry on this subject. Her video blog channel is full of videos about endometriosis and various ways it impacts women’s lives. This article is partly based on research Arielle has been working on and will continue.

For more information on endometriosis and adolescents, consider this article by endometriosis surgeon at the Center for Endometriosis Care. 

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