See, I worked in labor and delivery. Women came in labor with their birth plan, they gave birth and they sent us candy. Happy moments, for the most part but not always. But everyone got served and got cared for. In fact, if there was no room for them to have a baby, they'd be diverted to another hospital, and occasionally even in the US, and our health care system would pay the tab.
In the latter part of my career, I worked in bone marrow transplant, then in an outpatient chemo unit. Oncology is health care on steroids. You need a MRI this week? You got it. It can take up to a year for non-cancer patients. One of the rare PET scanner resides at the cancer clinic.
You could see opulence in that hospital, thanks to private donors and public funding. Patients are well taken care of, for all of their needs. The nurse to patient ratio is high in every parts of the hospital. I made sure my patients were comfortable and well taken care of.
And then I got sick.
Throughout the 4.5 years I have been sick, I have learnt that not everybody is treated equal when it comes to health care.
The name of your disease matters. See, if your disease is called chronic fatigue syndrome, you are out of luck. Whether your diseases belongs or not to a medical specialty matters. Whether your disease belongs predominantly to one sex matters. Women's diseases are not served as well as diseases such as cardio-vascular, erectile dysfunction or sports injuries.
I have learnt that specialists do not want to treat patients outside their medical specialty, especially when it comes to chronic diseases. I think they get worried of getting stuck with us.
I have learnt that governments are not interested to fund myalgic encephalomyelitis, especially since it's been branded early on as a psychiatric illness (which it isn't) and that they'd rather fund diseases that makes them look good. It doesn't make sense. You can only understand this when you get sick with a wrong side disease.
I have also learnt, in no particular order
- to not believe everything that is being said out there.
- to not trust every scientific paper as being the absolute truth
- to trust your instincts and stick to your guns
- to take one day at a time
- to not expect instant results when advocating for your disease.
- listen to your body
- be nice to yourself
- keep distracted, keep your brain busy
- have a copy of your medical records
- don't forget to laugh.