When you live with undiagnosed pain, self-advocacy, hope, and resilience are key.
When you live with chronic pain, it affects every aspect of your life. The discomfort and subsequent chronic fatigue make it difficult to move through life, keep hold of a job, do things for ourselves, and see our friends and family.
A chronic condition diagnosis is hard enough, but it’s even tougher going through all of this every day and being denied a diagnosis.
It can be exhausting and you can feel like giving up — but you are not alone.
In 2016, the Centers for Disease Control and Prevention (CDC) reported that 50 million people in the U.S. lived with chronic pain.
However, the real number is thought to be much higher than that, as this number doesn’t account for those without a diagnosis. According to the Undiagnosed Diseases Network, around 30 million Americans live with undiagnosed diseases (of course, not all of these will involve chronic pain).
Due to the high impact of chronic pain on American’s lives, the NIH’s National Pain Strategy called for more precise prevalence estimates of chronic pain, which will hopefully lead to a more accurate view of how many people live in chronic pain.
I’ve struggled with undiagnosed gynecological pain for going on 15 years now. In the beginning, I had heavy, unbearable periods with a cycle ranging between 3 weeks and 9 weeks and periods sometimes lasting for 15 days. I would experience excruciating cramps during ovulation.
I tried every birth control I was allowed (because I have lupus I have to limit my estrogen intake for risk of blood clots), but nothing effectively stopped the heavy bleeding and pain.
I began tracking my symptoms, and through my own research, I’m almost certain I have endometriosis. I experience all of these symptoms of endometriosis:
It’s a daunting list when I put it all together, and it’s hard to read in black and white. So it’s upsetting that I’ve relayed this to seven doctors, had various scans and procedures to try and get to the bottom of my pain, and no diagnosis has ever been settled on.
With no other options left and determined not to live in pain forever, I had a hysterectomy at the age of 28. This stopped the heavy bleeding, but because they left the ovaries due to age-related worries, I still had painful ovulation. Finally, this year, at the age of 32, I got my ovaries removed.
I am now going through perimenopause, but I am still convinced I have endometriosis and live with the pain of it most days.
The average diagnosis time in the U.S. for those with endometriosis is 6.7 years. I’ve been living in pain for nearly twice as long.
Since my surgeries, my list of symptoms decreased significantly, purely because I no longer menstruate or ovulate. But I still experience a lot of pain and it does impact my life a lot.
Chronic pain is notoriously hard to diagnose and many chronically ill people struggle for years to get a diagnosis. On average, for people with rare and chronic conditions, it takes 7.6 years and 8 doctors before correctly receiving a diagnosis. Some, however, still never get a diagnosis.
Some chronic pain conditions are notoriously hard to diagnose. This can be due to their symptoms mimicking other illnesses or a lack of understanding around them. Unfortunately, delays in diagnosis can have dangerous consequences.
A 2017 study in the World Journal of Gastroenterology found that although the expected diagnosis time for inflammatory bowel disease (IBD) was 2 to 6 months, many experienced a delay in diagnosis of up to 21 months. This long diagnostic delay was significantly associated with a higher risk of IBD-related intestinal surgery.
Why does this happen? For starters, unfortunately, sometimes we are just not believed by doctors.
Research shows that this is especially true for women and Black Americans (and doubly compounded for Black women). Being falsely seen as overly dramatic, in the case of women, or biologically different from white people, in the case of the Black community, affects how both groups are treated for their pain.
In other cases, undiagnosed pain can be due to a lack of understanding or specialist knowledge around a condition.
A 2018 study of 1,935 people with migraine found that 50 percent underwent unnecessary diagnostics and 34.2 percent were not treated according to evidence-based practice.
Living with chronic illness gives you incredible resilience, and you’ll need it for all the self-advocating you’ll have to do if you are pursuing a diagnosis over a long period of time. But please don’t give up.
I won’t lie, at times I wanted to give up. Some days when the pain is really bad and I’m curled up with a hot water bottle, I still do.
However, I know that the way I feel isn’t normal and it shouldn’t just be accepted — and I refuse to live this way forever. I live in hope that one day I will receive a diagnosis. Until then, I’ve become pretty adept at managing my own pain (I can’t recommend an around-the-body hot water bottle enough).
If you’re experiencing chronic pain and are struggling to be believed, please know that your pain is valid. It’s not all in your head and you deserve to have your voice heard.
Remember that sometimes doctors don’t always know best and you can always seek a second or third opinion. Doing your own research is not a bad thing, and trying remedies that help doesn’t mean you’re turning your back on science.
You deserve to live a pain-free life.
Article originally appeared on August 26, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on August 26, 2021.
About the author
Rachel Charlton-Dailey is a freelance journalist focusing on health and disability. Their work has featured on Verywell, Huffpost and Business Insider. She is also the founder of The Unwritten, a publication for disabled people, by disabled people. When not writing they can be found walking their dachshund, Rusty.