Sixteen-year-old me was always fighting for fairness for everyone.
I was going to work for the UN bringing about world peace. Something, which, given what’s going on in the world today, I’ve clearly failed to do. To be fair, it seems that even with much more than just one teenager, it’s a bit of a hard job.
What I haven’t failed to do, though, is stay true to that conviction to fight for fairness. Just perhaps not in the way that younger me imagined. Today I work in healthcare marketing. But before you stop reading and start imagining those awful sepia-tinted TV ads showing smiling sixty-somethings strolling beachside, celebrating their freedom from incontinence or high blood pressure, just hang on. That’s not me. Although, equally important for our quality of life.
I believe there are some things in life that should be basic human rights. Access to healthcare is one of them. But despite having access to healthcare, money and information, I spent nearly ten years in pain.
In my early thirties, I developed sudden, extreme abdominal pain. I went to several doctors – they all tended to be men in their 50s or 60s – and they all told me it was IBS, and that I should just drink more water. So, I drank more water and nothing changed. I was bloating so badly that I eventually borrowed maternity pants from a friend. I wore those for nearly two years. It was ridiculous. Over those two years, I went back and forth to so many doctors, and the best advice they had was for me to take a daily children’s laxative, and once a quarter (like it was some kind of business liability) to take medicine intended for people about to have a colonoscopy.
The sheer frustration of feeling not being listened to, not believed, and knowing that nobody was willing to get to the root cause was overwhelming. All through this I was working as the Marketing Lead for a company in the building industry, trying to hide what I was going through as best I could. But as my health issues continued, they fanned the flame that already burned in me to work in a space that helped people who weren’t having their voices heard or their needs met.
Back in university I studied marketing and communications, because it allowed me to explore my curiosity for different cultures, technology, and business. My internship was with the communications department at the American Red Cross, and I still remember going to the shopping mall wearing the big mascot costume! I even joined their board as a junior member. That’s where I realized I could use my love of communications to create change for a space that really mattered: health.
Since then I’d been looking at entering into the healthcare marketing and communications space, but without a scientific or medical background, it was hard going. So I used my skills in research and communication to try and arm myself with as much information about my own health as possible.
I had severe problems with my digestion and elevated IGA levels in my blood, which is a protein whose increased or decreased levels can indicate the body reacting to different problems. But no doctor looked at these two things as potentially connected.
I had to see a hematologist – they were concerned it was cancer – then concerned my kidneys were starting to fail. I ended up having several invasive procedures, taking unnecessary medications all because no doctor would listen and investigate my complaints holistically. I started to feel slightly crazy.
Over the course of this time, I was able to transition into healthcare. I knew someone who was in healthcare, and eventually she had an opening in her team. That was my way in. Helen Vandebovenkamp, thank you for changing my life. It was such a great fit, and allowed me to combine all my passions: a desire to help people, a love of marketing and communications, and an interest in the healthcare industry.
I also worked with a fantastic leaders Kasia Hein-Peters, MD and Jan Dobbenie who were understanding with my sick leave and had such compassion.
At work I started to learn about choice in healthcare, about getting second opinions, about asking and asking again… that made me push even more to figure it out. I learned you didn’t just have to accept things as a patient. Nor should you.
In the [long] end I did get my answers: an atypical form of celiac disease that doesn’t always show up in your blood, paired with IGA MGUS, and deficiencies in hormones and vitamins – linked to having undiagnosed celiac disease.
Now I have a great doctor in Amsterdam who looks at everything holistically, and she listens to me! She ran several tests, I get tested every three months to check my IGA levels and kidney function and I’m fine! I take a reasonable amount of pills, but they manage the problems, not just mask them.
I know that I’m far from the only person who has faced this kind of pain, frustration and upset. But I also know that by working in an industry that’s changed focus away from hard sales and towards informing both doctors and patients about the latest healthcare options available to them, I get to play a part in improving things.
Sixteen-year-old me wanted to remove injustice and improve equality. While of course it’s far from perfect, the healthcare industry is placing more and more emphasis on diversity and inclusion, and I’ve seen a huge improvement in the way we think about people, not just customers. It’s the change I want to see. And it’s the change I get to be a part of.
I think sixteen-year-old me would be pretty pleased with that.
