Survival

7:18 PM


I wanted to write this for a few reasons. The first and most important one is for you, the woman with endometriosis or maybe another painful illness who doesn't want to keep fighting anymore. Who has grown tired of being tired. Who is worn from yet another day of waking up completely in pain.

But it's also for me. Because even though I don't feel that way right now, and even though I have faith in my ability to fight, and even though I still find joy in my life, every single person with this disease has wanted to, at one point or another, give up completely. And when I ultimately feel that way again - and I will - I want to remember how I felt before.

If chronic pain hasn't made you want to give up on your life, I don't think you're being honest with yourself.

The reason I chose to write this today is because this week, I've heard more than one woman say she's wanted to end her life over her endometriosis. It's definitely not the first time I've heard this. I've read heartbreaking stories of women who have committed suicide because of endometriosis, and I can't judge or fault them for wanting a way out of their pain.

I'm sometimes asked how I manage to stay positive despite my illness, which makes me laugh a little because I don't consider myself a particularly optimistic person. In fact, if you asked me to be honest about my own outlook with endometriosis, it's a little bleak. I expect to feel worse, as the disease progresses.

So what do you do when your disease gets the best of you, when all you can do is survive? How do you wake up every morning? How do you find the desire to keep going?

Here are a few things that have helped me. They might not be realities for you, but I hope something I say helps you.

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Changing the demands I put on myself.

Of all the things I've had to accept with endometriosis (and I'm still learning), this has been the hardest. I'm a pretty ambitious person who likes to challenge herself, and there are times when my brain is ahead of my body. And as a young person, it's been difficult to not compare myself to other twenty-somethings who are traveling the world, running marathons, taking on non-traditional jobs and doing other things that I always thought I'd be doing right now.

But I started to understand that these expectations were only ones that I was putting on myself. No one else was asking me to be something I'm not. So I stopped trying to be.

I've found other means of self-fulfillment through music, my job, writing and advocacy. I've been more gentle with myself and focused on the things I can do, not the things I can't. I've celebrated my tiny victories - like waking up right when the alarm goes off or making a new recipe - so that I can work toward bigger victories.

I don't expect less out of myself. And I don't make excuses. But I refuse to spend my time wishing I could do things that I can't when there is so much I still can do.

Adapting my environment to work with me.

I've been blessed with a job I love that lets me work from home. This has helped me better cope with the pain and fatigue that limits my body, which have forced many women with endometriosis to quit their jobs to get at least some of their lives back. I know that working from home isn't a reality for a lot of women. But even outside of work, I've made efforts to make sure my environment is working with me, not against me.

I mentioned the bar chair I bought to help me cook and clean when endo pain makes it difficult to stand. I've also stockpiled things that comfort me and make me feel better on bad pain days, like blankets, pillows, socks and pajama pants. Oh, and cinnamon coffee and bath products.

But it's not just about objects or things that you can buy at a store. I've also made a point to get better at telling the people who love me what I need and how they can help. Before my illness, and still sometimes, I had trouble asking people to do things for me or get me something that I need. But I've found that most people want to help you. They want to love you and care for you and be there for you. 

So let them. And don't force them to read your mind and figure it out on their own. Tell them how they can help and specific things they can do, right now, to make your life easier. Maybe it's a night in with a movie instead of a night out downtown. Maybe it's putting off a phone call another day. Whatever it is, show you love the people in your life by letting them love you.

Reclaiming my body through self-expression.

This has been a big thing for me lately. I've always valued self-expression, but since being diagnosed with endometriosis, it's been even more important.

When you feel like you're being rejected by your own body, it's hard to feel like you have ownership over it. And when so many standards and "rules" are imposed on us as women, it's even harder to feel like you have any say in what happens to your body at all.

In January, I decided I wanted a tattoo. (Hang on, Mom. I know you're reading this.) I haven't gotten it yet, but I know I want it. My anti-tattoo husband didn't quite understand its importance and why I felt so adamant about it. I didn't really either, and then it suddenly dawned on me one night.

"You know what?" I said. "I think it's so important to me because I want to reclaim my body. I want to do something, just because I want to do it. I want to prove that this body is mine."

Maybe your form of self-expression won't be as extreme as mine. Maybe you want to dye your hair the color you always wanted, or wear an outfit without worrying if others like it, or something else completely different. Or maybe, like me, you want to keep going to the gym on your good days, even though the bad days might soon be ahead.

Or maybe self-expression for you has nothing to do with your body. Maybe it's writing and music, which I spend time doing. Whatever it is, I encourage you to find a way to reclaim your identity - the one you had before "endometriosis" was even a word in your vocabulary,

Finding joy in the journey.

This is almost an impossible task, especially when you're feeling miserable. How do you find joy when your whole body feels like it's falling apart?

For me, it's been some of the things I've already mentioned. In other ways, it's been this blog. There have been many times I've wanted to give up writing here because I felt I was rambling into the internet void or that what I was doing didn't have an impact. But every time I feel that way, someone sends me a message to say they love my blog or they read my story on another website. And that encourages me and brings me joy.

I've found purpose and joy through endometriosis by telling my story, advocating for others with my illness and sharing why women's health is so important. My illness gave me something to work toward and another way to help people. And through that, I have value.

At the same time, I've found joy in the simple knowledge that better days, truly and honestly, are ahead. There is so much music left to discover. There are so many places to explore that I haven't seen. There are experiences to share with my husband, cute dogs to be a dog-mom to, goals to achieve that I don't even have yet... There is so much left to be done that only I can do.

Letting people carry my burden with me.

I talked about this a little bit earlier, but more specifically, I encourage you to be an endo sister to another woman with endometriosis. Chronic illness is already alienating and lonely enough on its own. When you're constantly fighting to be heard by doctors and insurance companies and everything in between, it's so valuable to simply have someone who gets it.

When I was first diagnosed with endometriosis, I immediately sought out a community. I don't think I'd feel nearly as confident and assured as I do now without these women. I don't have to explain myself. I don't have to apologize for symptoms I can't control. I don't feel the need to be anything except myself. And when you feel the need to make others around you feel comfortable about your disease, it's a relief to have a place where that's not necessary.

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I know that there will always low points. There will be times I want to crawl into a hole and never come out again. There will be moments of anger, anxiety, despair and depression. I will run a gamut of emotions I didn't know I could feel, all because of endometriosis.

But I find comfort in the sun rises that tell me nothing is permanent. I find grace in a husband, family, friends and coworkers who love me. And I refuse to let endometriosis take away more than it already has.

And even if you don't have faith in yourself, please know that I do. Because I know women with endometriosis have incredible strength and are capable of amazing things. And as an endo sister, you are, too. And your fellow endo sisters will fight and support you, every step of the way.

You deserve that love. You deserve tomorrows. And the world deserves you.

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2 comments

  1. You are a wise soul, my friend! This is one of your best blog postings yet!

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  2. I read this as someone who has a chronic syndrome, as a woman, and as a person who values having a support system - even when I reject them. Thanks, Traci.

    ReplyDelete

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