I’ve been having an emotional few days. Maybe this post should be kept inside until I calm down, but I really feel like it needs to come out.
I keep talking to strong, beautiful women who are made to feel small and pathetic in their attempts to find help from the medical profession. I’ve posted before about the ‘one symptom per visit’ rule many doctor’s offices have and how they are basically negating the efforts of patients with systemic diseases seeking help. To me it’s a show of money grabbing, ego maniacs who got into the medical profession for all the wrong reasons, but I wont dwell on that today.
Many of these women, and I say women because Autoimmune Disease affects a disproportionate number of women, but there are definitely many men affected too (my disease happens to be predominately male, I’ve always been a bit of a tomboy,) are made to feel like hypochondriacs in their early attempts to find a diagnosis. So we know that Autoimmune Disease affects 1 in 5 people, but each manifestation of the disease (with a few of exceptions) is classified as RARE, so it is almost always the last thing that docs look for during a search for diagnosis of often systemic, migratory, transient symptoms. What hurt when you called to make the appointment, often has moved somewhere else by the time you actually get to see your doctor. Because we can’t pinpoint a single symptom, that stays in a single spot, and we can’t describe the feelings that come along with the symptoms including fatigue, memory loss, constant achiness, etc. we are pegged as hypochondriacs. If not to our faces, behind the scenes… but you can always feel the change of sentiment when you show up at your doctor’s office for the 10th time in 2 months. From the reception, to the referral desk to the actual medical pros. Less than a month before I was fighting for life in a hospital, I was told by the referral secretary that she didn’t put my referral through for the LAST THREE WEEKS because, and I quote “There are people that are sicker than you Marta.” This from a woman who has never seen the inside of a medical teaching institution, but she’s got the power, because she got the job at the clinic after finishing her waitressing job for a number of years. She apparently knew the level of my disease activity and made a choice to put me at the back of the line, and keep me at the back of the line.
I am curious how many people are actually hypochondriac. I imagine the number is pretty low. At least a lot lower than 20% of the population. How many people do you know who are hypochondriac? How many people do you know with an Autoimmune Disease? I would wager that you know many with the latter and none with the former. If you ask all the people you know from the latter how they were made to feel during their search for diagnosis, I bet many of them would agree that they were made to question themselves, feel belittled by the medical profession, and their self esteem was destroyed by their search for help.
I feel so blessed and lucky to have the doctor I have right now, but that came with a heavy price of feeling all the things I mentioned above. I know now, that my health is in my hands. I question everything. I know that more people die at the hands of doctors and hospitals and the worst of all, pharmaceutical companies, than any other thing. If a 747 plane full of passengers crashed every single day of the year, we would still not be at the same number of patients that die of iatrogenic causes.
Be your own best advocate, and when you have to go into an environment where you’re are seeking medical support, be as vigilant as you can possibly be.