When others don’t understand

by Ellen T Johnson

Soon after being diagnosed with endometriosis, I learned that having a strange, difficult-to-pronounce, invisible disease is a real disadvantage. Explaining the disorder took a degree of bodily candour I didn’t yet possess.

It would require at least some discussion of female anatomy, menstrual cycles, and pelvic pain. These were uncomfortable topics for me. I can only imagine how mysterious it would seem to friends and family!

My first few hesitant attempts to describe my new infirmity were met with blank stares, a few polite questions, and the oft asked:

“When will you get better?”

Although I’m sure friends and family cared about my health, they were too shocked, too puzzled, too squeamish, or perhaps too overwhelmed by my news to give me what I desperately wanted and needed – specifically, a hug, a kiss, and the phrase I never tire of hearing:

“I’m sorry this is happening to you.”

If you’re warmly supported by the people in your life who’ve taken the time to learn about endometriosis and its effects on you, your body, and your relationships, you are indeed lucky. Some of us don’t have that luxury.

Essential support and understanding is sometimes lacking in our close relationships. Not only do people not want to talk about “it,” they may actually shun the topic – or worse, shun us. Granted, our psyche might not be too wounded when co-workers, fellow students, or neighbours don’t comprehend the significance of what we’re dealing with (unless that lack of understanding affects our education or career, but that’s a topic for another discussion). However, it matters a great deal when our family, close friends, and loved ones don’t understand. Fortunately, there are some things we can do to help them – and ourselves.

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Others’ perception of illness

In general, people view illness as a self-limiting event. A person gets sick, they get treatment, they get better. They mistakenly believe that if they don’t get better, it must mean they have a fatal disease. Most people don’t know there’s something between a minor annoyance and a life-threatening illness. They aren’t aware of chronic pain, persistent disease processes, or invisible illnesses. It’s difficult for most people to comprehend because it’s outside their realm of knowledge and experience. But there are ways to help our friends and family understand what we routinely go through as we repeatedly deal with endometriosis.

Helping our parents understand

When I first told my mother the gynaecologist suspected I had endometriosis, she didn’t believe me. In fact, she doubted such a condition existed. She actually thought the doctor was making it up. She was convinced only when I sent her a page copied from a medical textbook. Then she began to blame herself, thinking she’d caused it.

Parents respond to the news that their daughter has endometriosis in a variety of ways. They may be skeptical, angry, sad, guilty, confused, or shocked. Like my mother, they may be in denial. Their emotions are understandable; they don’t want their daughter to have a disease or be in pain! It hurts their hearts to see their daughter curled up in a foetal position with a heating pad on her tummy month after month. They’re hoping and praying it will go away. Maybe the doctors are wrong. Maybe the medication will help. Maybe time will take care of it. Or maybe, maybe, if we pretend it isn’t happening, it will go away.

When I was an endometriosis support group leader, the mother of one of our members came up to me after a meeting and said:

“I feel so helpless! What can I say to my daughter that I haven’t already said?”

My suggestion was to hug her, tell her you love her and that you’re sorry this is happening to her. Frustrated, she replied, “I’ve already said that!” I suggested that her daughter would never get tired of hearing it. She looked at me with great surprise. She didn’t realise the importance of her continuing emotional support.

That’s one way we can help our parents and ourselves – by telling them what we need.

Don’t expect them to automatically know because they’d won’t. When I was having difficulty conceiving, I felt that my mother was being very critical of the decisions my husband and I were making. Unable to deal with her directly, I wrote a letter outlining how I felt and what I needed from her. Soon after, we talked on the phone. During the conversation, I learned that she didn’t disagree with our decisions at all! What I thought was criticism was actually fear. She was scared for us and desperately wanted us to be happy. From then on, she was only too glad to give me the support I needed. I felt as though a huge burden had been lifted from my shoulders. Never underestimate the importance of open and honest communication.

Once your parents understand what you need, you may want to consider enlightening them about the disease itself. For most of us, this isn’t an easy or natural process. It helps to have professionally prepared materials and a great deal of patience. More about the educational process later.

Helping spouses and significant others understand

It’s a well known fact that men like to fix things.

When the women in their lives have a medical complaint, they feel it’s their duty to fix it – or at least offer a suggestion or two about how it should be fixed. After years of indoctrination, cajoling, and gentle encouragement, my husband still has a tendency to offer a quick fix when all I need is his understanding. Just last week, I told him I was hurting; his first response was, “Did you take something for it?” Nurture isn’t his nature, but most of the time, he can be coaxed into it. And that’s good enough for me.

How do we teach the men in our lives to be good nurturers? First, we need to tell them what we need (besides fixing). Something like, “I appreciate your suggestion, but what I really need right now is for you to put your arms around me and hold me.” I’ve found that if I give my husband something to do, he doesn’t feel as helpless. You can put your significant other to work by asking for a shoulder massage, showing him where to place his hand on your stomach to ease the pain, or requesting that he call out for dinner.

The trick in any close relationship is to keep talking, even when you don’t feel like it. My husband gives me a hard time when I don’t tell him what’s going on. He feels left out when I keep it all inside. I think a lot of us do that because endometriosis wears us out. We get so sick and tired of it, we’re absolutely certain those around us are also sick and tired of it. As a result, we sometimes put up a protective wall and stop communicating. Our loved ones don’t know why we’ve withdrawn. All they know is that, for whatever reason, we’ve cut them out of our lives. In our house, my self-imposed isolation has often resulted in a defensive and angry spouse. I might be the one who’s not feeling well physically, but I’ve wounded him emotionally. These days, when I need to withdraw from the world for a while, I tell him first. He takes it upon himself to screen my calls.

Like parents, spouses and significant others don’t want to see you in pain. They sometimes go to extreme lengths to avoid seeing you suffer. One friend’s husband dealt with it by denying the existence of endometriosis – hoping that if he didn’t learn about it, read about it, or talk about it, it wouldn’t be real. Her solution was to bring him to the endometriosis support group meetings. He soon learned that endometriosis was very, very real. Soon after, he began accompanying her to doctor’s appointments. Eventually, he became more empathetic and understanding.

Gentle, well-timed “education” can also help spouses and significant others understand the life-changing disease you’re dealing with. More about the educational process in a moment.

Helping friends understand

Seven years ago, my mother had a stroke. Up until then, she was a vibrant, active, dynamic woman on the go. She and her many friends went on shopping excursions and had lunch together at least once a week. After her stroke, at the time she needed them the most, her long-time friends became strangers. Naturally, she was hurt by their sudden departure from her life. It seemed so unfair – to endure a life-altering medical condition and lose her friends all at the same time.

When medical problems cause dramatic changes in our lives, our friendships often go through dramatic transitions as well. Friends might withdraw, seem unsympathetic, or deny what’s happening to you. Some might try to put a “happy face” on the situation by trying to cheer you up or repeatedly telling you “it could be worse” or encouraging you to “look on the bright side.” While some friends may be overly protective, others might avoid you altogether. It’s confusing and frustrating. But it helps to understand that the things your friends say and do may not reflect their true feelings. Inside, they might be worried, scared, and upset by the changes they see in you. But often, they won’t tell you how they really feel.

Real friendship is worth preserving:

• Talk openly to your friends about what’s going on and how you’re feeling
• Explain the ways in which your life is different now
• Tell them what you are and aren’t able to do.

Maybe you can’t go shopping for six hours, but you can go for an hour on your good days. True friends usually have the capacity for understanding. If they truly care, they can make accommodations for your modified lifestyle.

It’s a sad fact, but there are some people in this world who simply aren’t capable of dealing with difficult challenges. They’re what my mother calls “fair weather friends.”

Despite honest and open communication on your part, some people still cannot (or will not) empathise or understand. They may react negatively when you can’t do the things you used to do. They may even try to make you feel guilty, as though endometriosis is your fault. Some people may even question your limitations, believing instead that you’re exaggerating or making it up for attention. These types of acquaintances will eventually undermine your health, your self-image, and your well-being. It may be in your best interest to re-evaluate your relationships with “fair weather” friends who doubt your honesty.

Real understanding

In my fantasy world, my friends and family understand me so well, I don’t have to explain what I’m going through. One word, one glance, and they just know. Not only do they know I’m not feeling well; they also know exactly how it feels. But that’s not reality. I can’t expect my friends and family to understand completely. They will never know exactly how I feel because they’ve never had endometriosis.

But I do know a few people who can identify precisely with what I’m going through. I found them through endometriosis support groups. With these women, I found real understanding. They knew my pain by heart. I soon discovered that the encouragement I received at the meetings helped alleviate some of the emotional burden I was putting on my spouse and family. Knowing there were others going through the same thing was both a relief and reinforcement.

If you have access to an endometriosis support group, you are very fortunate! Attend the meetings regularly and you’ll be rewarded with significant emotional comfort. As a bonus, you’ll likely form close and lifelong friendships – true friendships with women who really understand.

The training sessions

At some point, you’ll likely want to explain endometriosis to those you love and care about. Choose a time when you’re feeling strong and up to the challenge. Also be cognizant of your loved one’s frame of mind. As Sir Winston Churchill once said:

“Personally, I’m always ready to learn, although I do not always like being taught.”

Be sure your loved one is in a receptive mood before you begin. Timing is everything!

Choose a quiet, stress-free environment for this discussion. And it usually helps to relay your message a bit at a time. Endometriosis is a big and overwhelming subject to most people. Even though you may know the difference between an endometrioma and the endometrium, it isn’t necessary for your loved ones to have that level of detail. What we’re aiming for is understanding. So no long lectures!

Trainers tell us that adults learn best when the material is in an easily digestible format. So how about starting with a very broad, general explanation; something like:

“I’ve been diagnosed with endometriosis. This is what’s been causing me to have pelvic pain. It’s sort of mysterious because it occurs when the tissue similar to the lining of the uterus (womb) is found outside the uterus and causes growths. In my case, the endometriosis growths are on my ovaries, bowel, and uterus. It’s especially painful during menstruation. If you’d like to know more about it, I have some pamphlets from the support group, or you can learn more at www.endometriosis.org.”

Excellent educational materials can support your initial discussion. See our list of resources below for more information about where to obtain the best materials.

During the initial discussion or a subsequent one, you’ll want to tell your loved one what you’re hopin they will be able to provide. Perhaps you need help locating a doctor who specialises in endometriosis. Or maybe you need help with the groceries. Or maybe all you need is the simple understanding that there are some times of the month when you won’t be able to do the things you normally do.

This is a lot for your loved one to take in, so be patient. Understand that when our loved ones are silent, that doesn’t necessarily mean they don’t care. They might be processing the information, waiting to take their cue from you, or may be unsure how much you want to talk about your disease.

Training experts will also tell you the value of repetition. Don’t expect your loved ones to have a complete understanding of endometriosis after hearing about it only once or twice. Plan on repeating the general definition a few times.

Your loved one will likely have a few questions. They’ll probably want to know about possible treatment and your prognosis. The prepared materials will help you answer most of these questions. You might also suggest they go to the doctor’s office with you. If your doctor is receptive to a “conference appointment,” you can ask your doctor to explain your condition to you and your loved one. The doctor can then address some of his or her questions.

It’s also important to know your loved one’s limits. Although your family loves you, they won’t be as absorbed by the minutiae of endometriosis as you are. I vividly remember when I bought my first endometriosis book! I was so excited, I read it cover to cover in one day. Thinking my husband would be equally fascinated, I read an entire chapter aloud to him before realising he’d fallen asleep halfwa through! Lesson learned.

Although some family members might read a good endometriosis book (see resources below), most won’t. And it’s probably unrealistic to expect them to do so. Perhaps a better alternative is to suggest a viewing of the awareness video.

Other videos about endometriosis are available from support groups and online. Be sure to watch these programmes first to make sure they’re accurate, that they convey the message you want to convey,and that they’re suitable for family viewing. Unless you’re trained in resuscitation techniques, you’ll want to avoid programmes that show endometriosis surgery in close detail!

Regaining your power

It’s a sad fact that having endometriosis often means we miss out on life for days or even weeks at a time. When that happens, the people you care about will likely be disappointed. Help them to understand that it’s not you, but rather the disease. Explain that your body simply won’t cooperate with your wishes. But when you’re having a good day, it’s equally important to take full advantage of it. Do something you enjoy. See a movie, take a walk, soak in the tub, or have a quiet dinner with a dear friend. You will regain some power over endometriosis when you claim those good days as your own.

Open communication is one of the main components of any healthy relationship. Talk with your family,friends, and significant other about the ways in which endometriosis affects you. Help them to understand that you’ll have some good days and some bad days.

Supportive loved ones can help us through the inevitable tough times and help us celebrate our small victories. Nurturing their educational process is a good investment in your future health.

When education and open dialogue isn’t enough

There are instances where education and open communications about endometriosis does not naturally lead to greater understanding. Despite knowing the mechanics of the disease and understanding how you feel, some family members may still harbour doubt and resentment. They may secretly think women with endometriosis are lazy, unmotivated, unwilling to do what the doctor says, or even enjoy being sick!

Of course, nothing could be further from the truth. When we’re not able to do the things that previously brought us joy, we grieve that loss! We may look “okay” on the outside, but we’re definitely “not okay” on the inside. If your loved one doesn’t believe you when you say you’re in pain, you may want to consider professional couples counselling or family counselling. A psychotherapist can explore the reasons for their distrust and guide you and your loved one(s) toward resolution.

Training resources

When you embark on your educational process, you’ll need some good materials to reinforce your message. Listed here are a few resources to get you started. This list is not intended to be inclusive. Your local support group may have some of these materials, or they may have other materials that are equally effective. Many of the books are available online or at your local library.

A few of the best “educational pages” include:

» What is endometriosis?
» Symptoms of endometriosis
» Treatments for endometriosis
» Other articles from our archives

Support groups

Printed materials, books, videos, and more are available from support groups around the globe. Some materials are free, other materials can be borrowed or purchased. Check with the support group closest to you.

Video

Endometriosis from Endometriosis.org on Vimeo.Acknowledgments

Acknowledgments

This page has been updated by Lone Hummelshoj in 2011 (following the death of Ellen Johnson)