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I'm Rare, and Hospital Staff Can't Relate

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I sit at home in pain, unable to do anything. I consider going to the hospital, but how long do I wait it out before I go? I dread the fact that my only choice is to attempt to get some relief at the hospital and hope the doctors will understand.

Upon my arrival I check in and patiently wait to be called back as tears stream down my face. Triage checks your blood pressure and heart rate and asks why I’m there. Well, I have a rare painful disease that leaves me no choice but to come here and hope for some relief. I finally get back to a room where the wait continues.

Twenty minutes pass and the doctor comes in. He asks, “What is going on today? I see in your records that you have multiple ER visits and have chronic pain.” I then begin to explain that, “Yes, when my disease flares up, my only choice is to come here in hopes you can help me.” The doctor says he’ll run some tests and try to treat my pain. I tell him my disease is really painful and try to tell him more about it, but he doesn’t seem to care.

Another 20 minutes goes by, the nurse comes in and says, “The doctor ordered you some anti-anxiety medication to try to help your pain.” I say, “My pain has nothing to do with anxiety.” The nurse says, “Well, let’s try it and see if it helps, then I’ll come back and reassess you.” I plead with her and say, “I’ve had this for six years and pain medication is the only thing that helps and that’s why I have to come here.” She says, “Well, you have chronic pain and we’re trying this first.” The tears still stream down my face as she leaves the room and I’m pray the pain will end soon. Why are they doing this? Why won’t they give me the pain medication that helps me? Are they treating me like an addict?

An hour later the doctor comes in and says, “Your blood work looks good.” I beg him, still crying, “Please help me, it really hurts.” He tries to tell me about my disease when he didn’t know what it was until he Googled it. I tell him more about it, and he finally says he will give pain medicine a shot. The nurse’s station is directly outside my room and I can hear them talking to the doctor and they’re all saying it’s in my head and I’m looking for drugs. I cannot even describe how low I feel now. To hear people you trust talking about you like this… The doctor says, “Give her a shot of morphine and ship her out.”

Another 20 minutes go by and the nurse comes in with the medicine and says, “Here’s your medicine. The doctor is discharging you.” I say, “Please get it under control first,” and she says, “Sorry this is the doctor’s orders.”

I take the medicine and leave because I’m discharged. On my way out, a different nurse stops me because she sees the tears still rolling down my face. She says, “I’m so sorry for what you are going through, keep on fighting. You don’t deserve this treatment and I hope you get the help you need.” I thank her and head home.

After being home for two hours after leaving the hospital, the pain gets so bad, I pass out while walking and am rushed back to the hospital, now by ambulance. The same doctor sees me from before. He apologizes for not believing me before, and I end up being admitted for pain control.

Yes, I have a rare disease and I cannot help going to the hospital. Sometimes we have to fight for our rights as individuals and patients. Even if we can’t be “fixed,” we can be helped. The moral is, keep on fighting for yourself. Don’t let others tell you you’re pain is in your head. Demand the proper care because only you know what you’re going through and you deserve to be helped like anyone else, even though you are rare.

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Thinkstock photo by Ocus Focus

Originally published: March 22, 2017
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