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Monday, October 3, 2016

Four Years On


This weekend marked, as I call it on Facebook, Four Years of Not Dying. I had a hard time calculating it, to the point that I got a date wrong in my Litro piece. It just doesn't seem like four years. It can't have been that long, you know? It's too... fresh.

Then again, at 35, my perception of time is pretty weird. Referring to remembering something that happened thirty years ago still feels a bit weird and uncomfortable.

Or maybe it's because it's such a big part of my life. So acute. So real. Something I lived with four nearly twenty years. I've lived pain-free for, at best, a fifth of the amount of time I lived with pain. So I suppose it makes sense for it to feel fleeting.

In the four years since, I've spoken to many people who, via my writing or mutual friends, came to me to learn more about endometriosis. Maybe they had it and had the same sort of trouble I did getting treatment. Maybe a relative had it and they wanted more insight. In many cases, they worried they might have it and wanted to know how to go about being sure. As ever, I'm always glad to offer help and experience where I can.

While I have seen increased resources on social media and the web in general in recent years, we've still not gotten as far as one might hope. I still hear stories about women denied surgery because they're 'too young' to agree to a hysterectomy. I still hear about doctors demanding that women take into account the feelings of theoretical future husbands over their inability to function day-to-day, even though endometriosis is a leading cause of infertility and pregnancy is probably off the table already. I still, even now, count myself lucky -- an exception rather than a rule -- for getting the surgery I need with the only true side effects being menopause and not being stick-skinny anymore.

I'm very, very lucky. I wish I weren't. I wish my situation, my ability to finally find the help I needed, were the way the story goes for everyone who suffers like I did. I wish my story was average and not an inspiration. I wish, four years on, I could be writing about how no one has to go through what I went through because doctors understand more and people in general understand more.

Not the case. And it's a shame. Because so many of the people who could end up where I was could be saved that trauma via early detection. You can go your whole life with Stage I endo and never even know it. Many people do. But the best route is to check. Because if you get periods, you also get a 1 in 7 chance of having endo.

I wish I as an individual could do more. But I'm no crusader. I can only spread what I know.

Endofound.org is a great site with information, support, and donation and volunteer opportunities for those who want to get involved.

On a smaller scale, what can you do?

If you have a friend with endo, PCOS, or another chronic illness, be there for them when they need help. The pain is exhausting. When you said 'Let me know if you need anything,' mean it. Run an errand. Help clean the house. Bring soup. Drive them to doctor's appointments. If it's all right with them, be in the room with them to back them up in case the doctor tries to bully them out of treatment.

Stop treating pregnancy like it's the only valid way to start a family. It's important to some people, yes, and that's fine... But the 'You'll want babies someday' argument nearly killed me -- quite literally -- and it could do the same to someone you love. I say this as an adoptee myself: there are many ways to make a family, and none of those should be turned into a reason for someone to be left ill or potentially to die.

Donate if you can.

Spread the word if you can.

Be understanding.

I remember what it was like to be that tired, that helpless, and that in pain. If I had my way, no one would ever feel that way again. But realistically, the biggest thing I can do is urge the people who follow me, and who care about what I have to say, to care about and understand and help those around them.

I'm still celebrating being alive. I don't think I'll ever stop doing that, considering how close I came to that not being the case. But I'll never let myself forget that part of my life, because if I can, I want to be there for others. I hope you'll help.