Dear Healthcare Providers

Healthcare reform is a hot topic. People act like it’s a new subject, yet it has always been a controversial one. It seems that the attitude is if you don’t have the proper insurance, if you question the doctor, or if you insist that something is wrong with you, you will be “released from care.” The lack of care in my care was part of the reason I looked for a place where my health, and not my copay, mattered.

For months, I went from doctor to doctor, hospital to hospital, trying to find out what was wrong with me. Time and again I was treated by nurse practitioners, physicians’ assistants, and rarely did I see a doctor. I had to pay upfront, and then I would be treated with condescending attitudes and berated for asking questions. I had one doctor leave the room and refuse to see me because I asked too many questions.

I want to know: Who do you think you are? I live in this body, and I am searching for my well-being, and you act as if by asking questions that you obviously have no answers to, I am questioning your intelligence. I am not here to serve your ego. I am here for solutions, and these questions matter to me, your patient, the one you took the oath to care for, to do no harm to.

Do you think that leaving me in pain, not seeing me because I hurt your feelings, is helping you or me? I left my home country and moved clear across the world to Thailand. Away from all I know, away from my children and my friends because I could not get adequate treatment at home. Lupus has no cure; it is forever, and that means forever care. In Thailand, my care team managed my pain without opiates. I had one hospital stay where I asked if they could give me naproxen and they told me it wasn’t available, so I was given both morphine and Vicodin (hydrocodone bitartrate and acetaminophen).

Now that you healthcare professionals in the U.S. have caused people to become addicted, you treat them like addicts when they ask for pain relief. When we research our condition (you know, the one that causes pain daily), you treat us like we’re idiots for going online, when it took you months, and sometimes years, to even figure out what we have. We can read, comprehend, and learn the same way you did from your books in medical school, except we are living it, so we have a larger stake in what is happening.

When I first got sick, I told a rheumatologist that I thought I had lupus. He was too busy trying to be impressive to a group of interns that he barely listened to my symptoms and told me right away I did not have lupus or rheumatoid arthritis. He was so dismissive that I fired him after that one visit. He didn’t order any bloodwork, and the tests he wanted to run were on every joint in my body. I was going to sign up for this until he said he wanted to rule out carpal tunnel. I guess he thought I was an idiot. I’ve not heard of anyone having that in their knees and shoulders.

I went to him looking for answers after I had swelling in the lining of my heart. Upon my discharge from the hospital, staff recommended that I speak with a rheumatologist. Many months later, I was diagnosed with lupus by a doctor at the Mayo Clinic. I often wonder how many of the crappy healthcare providers cause additional suffering to the very people they are supposed to help, just because they were offended by our concern for our health. Please remember that we live in these bodies that are in frequent pain. Get off your high horse and treat us with dignity. We are more than your portion of the insurance payment.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.