This morning, I saw something in my Insta spoonie community that is troubling me terribly.
This beautiful young woman committed suicide after being unable to get help for severe pain due an endometriosis and interstitial cystitis flare:
Her last post on her Facebook account was this:
I have so many thoughts that I don’t know where to begin.
First, let me say that no nurse has any business speaking to a patient in that manner, regardless of her assessment of the patient’s pain. It is not for us to decide if the patient is actually hurting. Also, if she has no more compassion than that, perhaps nursing is just not for her. End of nurse-y discussion.
Now, as a chronically ill patient I have so much say:
I, too, have endometriosis and IC.
I had a hysterectomy at 34 for the endometriosis – so the idea that it can’t possibly “be that painful” just astonishes me. It can be unbearable to the point that many women have this major surgery to alleviate its symptoms. Why in the hell would emergency room staff not think it is serious?
As for the IC, it is an irritation of the lining of the bladder that, when flaring, literally will cause a person to double over in pain and (medical details are gross sometimes) urinate almost pure blood. But, no, that shouldn’t be causing too much distress.
I am horrified at how she was treated.
But I am not surprised.
As I have been to the ER more times than I care to think about recently with my RA, I have encountered a few doctors with similar thought patterns, who immediately suggest, in one way or another, that I am there for narcotics.
As it happens, when I go to the ER, I am NOT there for narcotics: I am there for high dose steroids, Toradol (an anti-inflammatory), labs, fluids, and sometimes x-rays (depending on the situation).
And, though I should be used to it, each time an asshole doctor suggests I am somehow just there for drugs, it has brought me to tears, because I resent the hell out of it.
Of course, I’m much older than this young woman and I’m a nurse so I am able to gather myself and tell Dr. Asshole to please go read my chart (because I always go to the same ER as non-drug seekers are advised to do) so he or she can see my diagnosis and usual course of treatment, which does not include narcs. At that point, Dr. A becomes a whole new person (and usually apologizes).
But it really doesn’t matter.
I shouldn’t have to “prove” myself to them.
Nor should any other patient with a chronic illness.
And, for a young woman in terrible pain to be treated so badly, rather than just given the benefit of the doubt, makes me absolutely sick.
Allison went home in severe pain, having gotten no help and feeling like there was no end in sight and this was just how it was going to be.
And so I do understand how, in those moments, it was just too much.
And it just breaks my heart.
Because she should have been – and easily could have been – helped.
The suicide rate for chronic pain patients is three times that of the healthy population.
That comes as no surprise to me, as a person who lives with moderate to severe (depending on the day) chronic pain, but that doesn’t mean I accept it.
More can and should be and must be done.
From educating hospital staff (so other patients aren’t treated like Allison) to teaching the general population to stopping this damn Republican anti-healthcare bill (which would cost many spoonies their health coverage and cut essential mental health services that are so needed as well), there is so much work to do.
It all starts with an open dialogue about these issues and understanding and people being aware of what is happening.
It also starts in our communities with reaching out to those who are ill. Sometimes extra support – an understanding friend to be there, hold a hand, help come up with Plan B – makes THE difference.
This sort of thing should not happen ever.
It is so unneccessary.
It is so preventable.
I’m so sorry, Allison. You were failed on so many levels. Rest easy, sweet girl.