This journey of mine, through chronic illness and pain, has shown me many things about a community that I never thought I’d become a part of. A blog that began as a way for me to cope with my ever-changing world, has evolved into work as an advocate of chronic illness and pain for a community that needs to be heard. I know I am among many who have pledged to give voice to the pain of this community and shed light on the many struggles we share, and I am very proud of that. However, as a part of this community, I am always pained that what unites us in so many ways, is illness and chronic pain. But if I can reach even just one person, and make them think, I feel I have done my job well.
One of the things I have found that we, in this chronic community share, is our complete and utter exhaustion with doctors and the medical community as a whole. When you first venture onto Twitter or Instagram and begin connecting with people, one of the first things you begin to see is the trepidation in which we go into new appointments. There is an inherent fear that we will: 1.) not be heard 2.) be told that it’s nothing a little diet and exercise can’t fix 3.) be told it’s all in our head. There are more, but those are the basics. There are thousands of us out there, if not millions, doing this ridiculous game of trial and error with doctors, hoping that we’ll eventually find that rare and elusive creature, who will listen and be able to treat us. Our health should not be compromised- many of us for years- until we finally get a doctor who can diagnose and then go on to treat.
Think about this for a minute, those of you who have never had to grapple with chronic illness/pain. Think about how you would feel if you were sick, miserable for weeks, unable to determine what is wrong with you and when you finally going to the doctor you are completely, and utterly, let down. Not only do they just blow you off, but try to send you home with anti-depressants and send in a nurse who explains to you the merits of a good diet and good sleep. Meanwhile, you are back at square one, not knowing what is wrong with you and now, afraid to seek out any more help. But it is that very illness, and the desperate desire not to live with it, and regain your life, that drives you to seek answers and go to more doctors, where you are let down again and again until you begin to wonder if it is “all in your head,” until you find that elusive creature and are finally heard and given name for what has been causing you torment- six years later. That is not a typo and for women, it is sadly, common. Take something like endometriosis, which affects one in 10 women, yet still takes, on average, seven to eight years to be diagnosed. (Schopen, 2019) I’ve spoken to women who have endured six years of their health in chaos before finally getting help, others less. Some have seen upwards of 17 doctors, while others less. I count myself lucky at 4 years and 10 doctors, but it shouldn’t be this way.
If I could be granted one wish, it would be for the medical community to understand how their disregard of chronic illness patients on the whole, and more specifically, their disregard of women’s health, has affected us. You have women, young and old, who look at their medical professionals with a skeptical eye because we have been treated like over-dramatic teens for much of our pre-diagnosis illness. We’ve had to become educated in our illness, reading volumes upon volumes of research work, articles and books, to become our own expert and advocate and in many cases, we’ve had to educate our medical professionals on our illness. If you think this sounds ridiculous and I am over exaggerating, I can tell you that I am honestly not, but it would be easier and far more illuminating for you to take a dive into Twitter or any platform with chronic illness groups and ask.
We still live in a world designed by men, for men. There is an incredible amount of gender biased research that still exists. For instance, this troubling fact: nonsmoking women are far more likely to get cancer than nonsmoking men. However, lung cancer research frequently doesn’t break down data to gender specifics, as learned by a recent study done by Brigham and Woman’s Hospital and George Washington University. (Barlow, 2019) The bias continues, touching on medical research with mice. In Sorge and Mogil’s research, investigating how animals develop an extreme sensitivity to touch, which they hope will one day help pain patients, they admit that they “never would have made their discovery if they had followed the conventions of most pain researchers.” (Dance, 2019) It is interesting to learn that a couple of the main reasons why pain scientists have gone with male mice is: because they worry that “females’ hormone cycles would complicate results and male mice is just how it’s done.” (Dance 2019) In response to their studies, many scientists are now using both mice, as they are finding how invaluable both sets of data are. “In 2016, the US National Institute of Health (NIH), made it a requirement for grant applicants to justify the sex of animals used in experiments.” (Dance 2019) While this is a definite step forward in how we obtain medical research data, it will still take years before much of this research can be synthesized to see how it can best be applied to the treatment of women.
This is a very female-centric piece. I feel strongly that women’s health has suffered, not just in clinical care but research, because the field was pioneered by men and change has taken so long to shift that. I have an understanding of medicine being very steeped in tradition, however, there comes a time when traditions must change in order to harness new information that could have the potential to change lives. I do not think there is a better time than now, to make these changes so that women can have better lives and the trust that has been lost, can be regained.
Dance, A. (2019). The Pain Gap. Retrieved from https://www.nature.com/magazine-assets/d41586-019-00895-3/d41586-019-00895-3.pdf
Schopen, F. (2019). The healthcare gender bias: do men get better medical treatment?. Retrieved from https://www.theguardian.com/lifeandstyle/2017/nov/20/healthcare-gender-bias-women-pain