You’ve experienced extreme pain for most of your teenage years and what few adult years you’ve lived so far. When you talk to the doctors, their response is, “Oh, that’s normal,” and you listen to them. I mean, they did go to medical school for years, so they obviously know everything medical. Right?
That was my first big mistake of my adult life. I figured my pain tolerance was just a lot less than the average woman, so this was just my normal. If you ask anyone with a chronic pain disease, they will almost always tell you the same thing: “I wish I could go back in time and tell my younger self to push the doctors more.”
When you live almost every day in pain and you haven’t been diagnosed with anything, it’s a struggle. How do you tell your employer, “I’m in pain for no reason and have to call out multiple times a month, but please continue my employment with your company”?
This “in-between” stage of trying to figure out what is wrong with you is torture — all the tests and procedures and blood work. You feel like a scientific experiment. You know as soon as you find out what’s wrong with you that the relief of an actual answer will be like the entire world lifted off your shoulders. It’s not all in your head; you’re not over-exaggerating everything you’ve been feeling. But what happens after that moment of relief?
It’s been a little over a month since my confirmed diagnosis. My doctors had suspected endometriosis for almost three years by the time of my surgery, so I was prepared for that — but I wasn’t prepared for the PAD (pelvic adhesive disease, thanks to the inflammation of the endometrial adhesions), uterine fibroids and uterine polyps.
At my post-op surgery, hearing the doctors confirm everything and tell me they were able to remove everything was amazing! I was feeling great and was validated by the news. But as I’m driving home from work, my new theme song for life, “Fight Song” by Rachel Platten, comes on. I’ve listened to it so many times since my surgery; I really fell in love with it. But this time, I’m listening to the lyrics, and as the words “take back my life song” play, I just lose it. Warm tears roll down my face. That amazing feeling I’ve had since my surgery is long gone, only to be replaced with dread and fear.
I’m going to have this pain for the rest of my life. It’s not like the flu, where you go to your doctors and they give you medicine and voila, you’re healed! I go in for surgery to have everything removed, and in about six months’ time it’s just going to grow back until I can’t handle the pain anymore again. Then, repeat. I’m not going to miraculously heal. Surgery doesn’t mean that I’m cured. It means that I’ll have more good days than bad for a change until it comes back.
As a 24-year-old woman with an invisible chronic pain disease, this thought terrifies me. My amazing and patient husband has helped me out more than a husband should have to. The days that I’m stuck in bed, or the even luckier days when I barely make it to the couch, he brings me what I need without a single complaint. He takes on the housework, cooks meals and takes care of our dogs. I feel like such a burden in life. Like a failure. Not only has this disease taken away my life, but possibly my fertility. How is a woman supposed to care for her family when she can barely care for herself?
This disease is not only something I have to live with for the rest of my life, but something that my husband will have to handle as well. He’s become very aware of my non-verbal signs that I’m in pain, or very close to a flare, even when I say I’m fine. He’s gone above and beyond our vows of “in sickness and in health.” I’m going to warrior on with this life as I believe this is the life God chose for me. But as Rachel puts it, “I’ve still got a lot of fight left in me.”
Lead photo source: Thinkstock Images
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