It’s probably hard to tell by reading here, but in my day to day life; I don’t talk much about endometriosis. Or pain. Or infertility. I try to go through my life and conversations leaving those harder parts out. I do this for a million different reasons, but for me the biggest one is this; I don’t want to appear weak. I don’t ever want to appear weak.
A lot of endometriosis sufferers are the same way. It’s hard to describe an ailment that no one can see. Difficult to discuss pain that is to the outside viewer invisible. We all easily empathize with the person with a broken bone or stitches. We quickly understand and recognize their pain. But the same isn’t true for endometriosis. To the outside viewer, there is nothing there to confirm the complaints. So complaining at all becomes uncomfortable. As though you’re opening yourself up to judgment and questions.
So I don’t. I don’t discuss my pain. I go through my day as best I can with a smile on my face, consistently counting down the hours until I can get home to my heating pad. But never eluding to more hurt than those around me really need to know.
The pain has been getting worse though. As the weeks have passed since this last IVF, the pain has definitely increased. And it has remained high in my abdomen, making me progressively more nervous about how far this disease has spread at this point.
If we’re being completely honest, there is also a mental element there. Yes, the pain is wholly physical and real, but mentally I know what that pain means. I know what the underlying cause is. The disease that has spread throughout my body and threatened my dream of being a mother every step of the way. Were this pain caused by something else (pregnancy for instance) it’s fair to assume that it would be a pain I would be more willing and capable of handling. But as it is, it’s a pain brought on by nothing good. And as such, all I want is for it to be gone. For the disease to be eradicated from my body.
But describing that to others is difficult. Putting into words how I feel about this pain is tortuous. I am not a complainer. Not a whiner. Not a fan of appearing weak. And while I would probably be much more apt to show off a broken ankle and lament about the hurt; with this I often keep my mouth shut.
Because there is nothing to show. No proof to provide of my pain. No justification to lend to my words.
(Courtesy of Google Images)
Endometriosis is often described as an invisible disease, because to the outside observer; there’s nothing there to observe. It can’t even be diagnosed without surgery. And the pain can’t be quantified in any way shape or form.
To most in my life, I appear healthy. And the reality of the situation is, I am healthy. I don’t get colds or flu’s. I don’t get knocked down by strep or pneumonia. It’s rare that I ever complain about feeling ill at all in fact. I don’t even have a general health practitioner. In the 3 years that I've lived in Alaska, I've never needed one. I am healthy.
Except for this disease. This invisible disease, lending constantly to pain and anguish. This disease that is so hard for me to put into words for those with questions. And so often, I don’t. I don’t say anything. I go about my life trying to live as normally as possible. Striving to be the perfect picture of health, even when I know how far from the truth that is.
For those who know about my upcoming surgery without knowing much more about my condition, it must be confusing for them. Confusing that I would need to travel outside the state to see a specialist when day to day I seem so normal. So healthy.
To them, it must seem as though there is nothing there that needs to be fixed.
But I know. I know what this surgery means. I know that I will wake up likely feeling better than I have in the last year. That the pain of healing won’t hold a candle to the pain I’ve been in so regularly up to this point. That within a week I will find myself thinking about how I didn’t even realize how awful I had felt… not really. Not until I felt better again.
I know this, because it’s what has happened my last two surgeries. I know this, because I expect the outcome to be even greater this time around. With this specialist doing everything he can to eradicate my body of every last bit of this disease.
This invisible disease.
I’m lying in bed on my heating pad as we speak. Aching in ways that scare me. Because I can’t help but visualize what all that aching means. What further damage is being done.
But I’m hopeful. Hopeful that a month from now, this aching will be a distant memory. That a year from now, it will continue to be a thing of the past. And that as the years go by, I will find myself forgetting more and more what it felt like to be in this pain.
I want to be the healthy girl on the inside that I portray myself to be on the outside.
Free of invisible pain.
Of interior aches.
Of an unrelenting illness.
No longer the girl feigning health and comfort.
But the one actually experiencing it.
And in this surgery, I am finding hope.
