I’m 23 and have had arthritis for a decade, but doctors told me I was making up my chronic pain for 5 years

A woman sitting on a hospital bedGetty Images I developed severe chronic back pain when I was 13, but doctors told me I was faking it.   After a long fight, I was finally diagnosed with ankylosing spondylitis at 18.   Studies show women are seen as “not accurate reporters of their pain” while “men are more stoic.

” Dr. House isn’t real, but I always wanted to walk into a hospital and see him. The idea of an eccentric, brilliant doctor who forensically studied your body to come up with an obscure but correct diagnosis suited 13-year-old me.

 Instead, I would go to a long line of doctors or specialists and tell them my story: I had chronic back pain that started immediately after minor surgery to remove some rare skin tumors. (We later learned the two weren’t connected. )  I was in agony every day, it was spreading, and I was losing hope.

I would show doctors how little mobility I had and beg for help.  I got many pitying looks and referrals for scans or blood tests. Some doctors would frown and suggest that I could work through my pain with “mindfulness.

” One doctor was bold enough to look me in the eyes and tell me it was all in my head — that I was faking it. I had no response but to sob.  The cycle of pain without diagnosis consumed my teenage years until I was 18.

It’s not uncommon for women, especially young women, to not be taken seriously when they complain about having chronic pain. Studies have shown that women are seen as less reliable sources of information on their bodies than men.  I lost hope multiple times.

During the years I spent fighting to be believed, I also spent many hours staring at the ceiling of my teenage bedroom, wondering if I should give up on life.  I felt suicidal when I was told that I was being dramatic or couldn’t possibly be in the pain I was describing. Finally, when I was 18, a rheumatologist, a specialist who diagnoses and manages chronic inflammatory conditions, slid a pamphlet across his desk with the term “ankylosing spondylitis” circled.

 “That’s what you have,” he said.  Back painGetty ImagesI was stunned. I was heartbroken.

I was overjoyed. I was also confused about how to pronounce it.  I finally knew what was wrong with me.

Ankylosing spondylitis is a form of inflammatory arthritis that affects 220,000 people in the UK and 3. 2 million people in the US. Three in 10 people, myself included, never show any signs of the conditions on scans, which is one reason it took so long to get my diagnosis.

  I finally got some peace knowing what was wrong with me and being able to learn more about the monster I lived with.  But it’s a degenerative and incurable condition that would be with me for the rest of my life. The medication stops its progression, but the condition had years to work its way through my body before I finally got help.

 That hurts. I won’t bother with platitudes about how it’s made me the woman I am today, because that’s not true. I’d take a cure in a heartbeat.

But that’s not the main struggle of living with chronic pain for a decade.  Even though I have my diagnosis and I’m on medication that works well to manage the majority of my symptoms, I still have to fight for recognition.  World Arthritis Day 2022I recently went to the gym and a personal trainer told me he “doesn’t believe” I have arthritis.

People constantly tell me that it must be something else, maybe a sports injury. Others love to recommend a magic pill their aunt took that cured all her ailments. They tell me I’m “too young” for a diagnosis.

As I said in a 2018 TEDx Talk, you’re only allowed to tell me that if you have a fix-all pill in your hand.  Whatever the intention, rejection and disbelief are a common part of my life, and it’s exhausting.  October 12 marked World Arthritis Day, a day to send support to friends or loved ones with the condition and to reconsider the way we think about the disease.

 Woman having lower back pain. sutteerug / Getty ImagesHaving had this condition for a decade — almost half of my life — the main lesson I’ve learned is how to advocate for myself. Being armed with statistics about arthritis allows me to defend myself against people telling me it’s not possible I have the condition.

I have to be a walking encyclopedia of medical knowledge to explain what the condition is and how it impacts my entire body. I’m always ready to present my case in order to get some respect and acceptance.  This is a common experience for many disabled women.

 Several studies have used the general role expectation of pain, or GREP, questionnaire to understand how the gender of a patient changes the way their experience of pain is viewed. Many of those studies have found that women are seen as quicker and more likely to report pain and more sensitive to pain than their male counterparts.  A landmark 2003 study on the topic, “The Girl Who Cried Pain,”  included observations from medical professionals like: “Women complain more than men; women are not accurate reporters of their pain; men are more stoic so that when they do complain of pain, ‘it’s real’; and women are better able to tolerate pain or have better coping skills than men.

” A decade later, I wish I could say that the healthcare industry has adapted to support women and girls better, but data shows this isn’t the case.  Another study published in May 2021 found that women are perceived to be in less pain than men, even if they rated their pain at the same level as men. Women are also less likely than men to receive opioid painkillers in the ER.

This is why I lost my teenage years, the reason behind my large therapy bill, and explains why so many other women suffer.  The world is set up to ignore women in pain — and arthritis even more so because it is not seen as a young person’s disease, even though 10% to 20% of patients with ankylosing spondylitis are under the age of 18.  I imagine the girls who, like I did, sit on the floor of their school gyms, sobbing that they will never be able to participate.

 I still face doctors who don’t believe me, I still beg to be listened to and supported, and I continue to hear stories of women who are rejected at every turn.  We are past the point in history where women get lobotomies for hysteria, but the world has a lot of work to do to break the cycle of women being rejected as dramatic for simply being ill.  Read the original article on Insider.