Answers, Not Drugs.
Doctor Shopping While Female in the Age of the Opioid Crisis.
I glanced at headline recently while in-between appointments, it said something like, “I’m not looking for a doctor to say want I want to hear, I’m just looking for answers.” Having just been to our sixth medical provider for my daughter in the past two months, I wanted to scream, “YES!”
Doctors are great at treating everyday illnesses, but when it comes to the unexpected or unknown, you tend to get shuffled around and dismissed. It gets worse if you are a female with chronic pain. The statistics show that not only are doctors more likely to dismiss your pain levels, they are also less likely to prescribe medications, and to assume your pain is psychological, rather than physical.  If you happen to be a woman that is not white, your odds just got even worse, as one study showed that “black patients were significantly less likely than white patients to receive analgesics for extremity fractures in the emergency room (57% vs. 74%), despite having similar self-reports of pain.” 
My first memories of severe pain are from the age of 9 to 10 years old. My knees began to hurt bad enough that I didn’t want to dance anymore. At the time, I was told it was “growing pains.” It was around this same time that I started having severe pain in my lower abdomen, particularly when moving quickly or jumping. A definitive answer was never given for those weeks of torture. Through constant headaches, severe knee pain through present times, back and neck pain from two bad car accidents — Never once has my pain been taken seriously, and never once have I been prescribed a painkiller, other than a tiny script post knee-surgery, that would last me maybe 10 days, even though I would be crutches for months.
I broke down and went to see the same orthopedic that had done my knee surgery at 16, again when I was 30. My knee was bad. It was constantly swollen, bruised, and putting weight on it was unbearable most days. Before I could see him that day, I had to fill out a slip of paper that wanted to know if I had ever been to a pain management doctor. Hesitantly, knowing the go-to the assumption of pain management clinics in Florida, I said yes. I hadn’t gotten any opioid painkillers though. I had a one-month supply of muscle-relaxers and a sleeping pill, to manage my pain after a wreck that permanently damaged my neck.
That visit ended in him telling me “I was getting older” and that I shouldn’t try to go on walks or short jogs, my joints couldn’t handle it. The was no real answer to why I was in so much pain. No x-rays, no treatment plan. Just go home and be good with your pain. My experience isn’t uncommon though. In a survey of women who experience chronic pain, when asked: “Has a doctor ever told you that you will have to learn to live with your pain?” 75.01% of responded yes. 
That is why when we visit doctors and don’t get “real answers,” for example why a 10-year-old girl is constantly in pain, we start doctor shopping. We become desperate to find someone who can give us a clear-cut why with a treatment plan. However, I have learned you must be prepared to advocate for yourself loudly, and cast your net wide to find the doctors and specialist that might be able to help you. Especially if you suspect you or the person you are seeking care for may have a rare disease. You see, “40% of primary care providers and 24% of specialists indicated that they lack sufficient time to do a workup for a rare disease even when they suspect the patient may have one.” This attributes to why on average it takes 4.8 years from the time symptoms begin until an accurate diagnosis is given. 
When doctor shopping, your not just hoping to find one of those rare medical providers that will invest the time needed to properly diagnose and treat you, you are looking for one that will take complaints of pain seriously. Already fighting a downhill battle as a female seeking medical care, when you walk into a doctors office complaining of pain, whether from a rare disease or otherwise, the process becomes even more difficult because of there is a chance that you are an opioid addict just looking for a new script. Just searching “opioid” on Google will bring up a prominent sidebar warning you of addiction and dependence, with the following warning,
“The US is in the midst of an opioid overdose epidemic. If you or someone you know needs help, effective treatment is available and can save lives.”
Yet, studies have shown that on average, only 8% and 12% of those that use opioids for chronic pain become addicted.  Sally Satel, M.D., states in a piece for Politico that she has found from studies she has reviewed that “…those who do become addicted and who die from painkiller overdoses tend to obtain these medications from sources other than their own physicians.”  But in the age of sensationalized “opioid epidemic, a trip to a doctors office with complaints of pain, is likely to be handled in a very conservative manner.
For my daughter, this conservative treatment was most recently doled out by a rheumatologist, chalking her constant pain up the fact that “lots of kids are hypermobile,” with a referral for 12 weeks of physical therapy. I can’t quote the conversation for you as I pretty dumbfounded and defeated by the time it was over, but I was told she just needs to strengthen her muscles and she’ll be fine. But hey, if she’s still hurting like this after the age of 12, we would consider that is something more. Oh, and you might want to have the pediatrician start monitoring her liver and kidneys if she keeps having to use so much ibuprofen.
All of this came despite the fact that I stated her current physical therapy was causing her more pain, that we were currently tracking her heart rate by order of the pediatrician due to difficulty breathing and chest pains, and my concern that she kept getting red flushed cheeks and that she was sweating for no apparent reason.
Up until the point that the widespread joint pain became so severe that my daughter couldn’t make it through an activity without taking ibuprofen before going, and using combinations of ice and heat therapy to just minimize the pain afterward, she was very active and has been for years. She plays soccer, was in four dance classes, and in gymnastics. I have a hard time accepting that she just needs better muscle strength and the pain is going to go away. But I’m not looking for drugs for her, just answers. Yet, in this time of the opioid crisis, I fear we will be adding to the statistics of waiting years for a proper diagnosis.
In the meantime, I’m doctor shopping; making a list of more specialist and hoping to up our odds of having a someone believe her pain. I’ve also informed my husband, who usually isn’t at the appointments because he’s busy working to pay for it all (that’s another story) that he’s going to have to start coming and being the one who interacts at the appointments. While gender bias sucks, it exists, and sadly my daughter has a better chance of getting answers with her father by her side than myself.
 Seritan, Andreea L., and Scott M. Fishman. “Gender Stereotypes in Pain Diagnosis.” Journal of Ethics | American Medical Association, American Medical Association, 1 July 2008, journalofethics.ama-assn.org/article/gender-stereotypes-pain-diagnosis/2008-07. Hoffman, Kelly M., et al. “Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs about Biological Differences between Blacks and Whites.” PNAS, National Academy of Sciences, 19 Apr. 2016, www.pnas.org/content/113/16/4296. “Accurate Diagnosis of Rare Diseases Remains Difficult Despite Strong Physician Interest.” Global Genes, Engage Health, Inc., 5 Mar. 2014, globalgenes.org/raredaily/accurate-diagnosis-of-rare-diseases-remains-difficult-despite-strong-physician-interest/. SurveyMonkey. “Women in Pain Survey.” Welcome to SurveyMonkey!, www.surveymonkey.com/results/SM-P5J5P29L/. Vowles, K E, et al. “Rates of Opioid Misuse, Abuse, and Addiction in Chronic Pain: a Systematic Review and Data Synthesis.” Pain., U.S. National Library of Medicine, Apr. 2015, www.ncbi.nlm.nih.gov/pubmed/25785523. Satel, Sally, et al. “The Myth of What's Driving the Opioid Crisis.” POLITICO Magazine, 21 Feb. 2018, www.politico.com/magazine/story/2018/02/21/the-myth-of-the-roots-of-the-opioid-crisis-217034.