I was recently diagnosed with something called Mast Cell Activation Disorder (MCAD), also known as Mast Cell Activation Syndrome (MCAS). It’s considered a rare disorder, although there is more and more information coming to light on the illness.
After getting diagnosed, I wanted to connect with other people who have MCAD and learn more about it. This lead me to search Facebook for support pages.
Support groups, online or otherwise, are supposed to be a safe haven. Unfortunately, online groups tend to have people in them who think that because they are behind a keyboard, they are not accountable for what they say and do.
I joined a MCAD support group looking for answers. For a while, it was okay. I learned some things. I heard a lot of people raving about a specific doctor that was supposed to be the pioneer in the treatment of this disorder. I decided to google his name and found out that he had recently opened a clinic not far from where I live in NY. I thought this was good news. It wasn’t.
After visiting his site, I saw that not only did he not take my insurance (Medicare and Medicaid), he also charged $2,000 a visit. This did not include any testing or imaging. This money was just to be in his presence. I had to email him and find out if I read this correctly. To my surprise, he emailed me back and confirmed those rates and told me that there was nothing he could do for me as my insurance was not good enough, but that he would call my doctor to give HIM a free consultation. Wait, he was going to give my doctor a free consultation? I am the one who is sick, not my doctor. I was confused and expressed that. I also explained that it was a little unreasonable to charge people those prices, especially suffering people on disability who have a low-income. He proceeded to, in his words, give me a “math lesson” about how he had to make money. I, in return, gave him my math equation to solve. I said that I was 35, on disability, spent the last 4 years sick as a dog, and own nothing except a car that is worth a few trips to his clinic. Solve that problem.
Back to the support group.
I turned to the support group on Facebook to explain what had happened and how I thought it was outrageous how some doctors want to get rich off of sick people who are disabled and have little to no money. I also asked the group for doctor recommendations in the area – ones that took my insurance and weren’t out to rob you.
What followed was absolutely appalling.
Let me start out with the positive. There were a dozen or so people who reached out in kindness and compassion. They private messaged me information and offered their support. Some commented helpful advice. Others, however, decided to bully and gang up on me — telling me I should shut up and let the doctor do whatever he wanted, as he was the savior of the world; that I was the one who was entitled and had the problem, not the doctor. I was called derogatory names. I was berated. I was told that doctors like him can do whatever they want because they are geniuses. The admins of the group did nothing to stop this. This went on for hours. My anxiety was now in high gear.
I was so outraged that people in a support group were being so harmful and hurtful and devoid of any compassion. I was livid that people thought it was okay for doctors to treat disabled patients with no regard and thought it was ethical to charge whatever they wanted. What about the Hippocratic Oath doctors take to do no harm? To help and to heal? I continued to be cornered and harassed online. I got angry and I let these people know, uncensored, what I thought. I then left the group.
Since then many people have contacted me to tell me their personal stories of being bullied in that very group. They wanted to let me know they saw the posts and comments and thought it was totally unacceptable. Only one woman, though, stuck up for me publicly and said it was unfair to gang up on someone so harshly. I understand why nobody wanted to stick up for me publicly. It was because this group was toxic and abusive and they feared the same treatment.
I have two points here.
Bullying of any kind is never OK. Bullying in an online group for sick people is so disgusting, there must be a special place in hell for people who engage in such behavior — EVEN IF you are sick yourself.
Second, there must also be a special place in hell for doctors who like to take advantage of people or who only serve rich people, while turning away people who really need their help. They have no business being doctors. Work on Wall Street, but don’t work with sick people. We are not here to pay for your vacation homes and fancy cars. Yes, everyone needs to eat and make a living and pay for their kids’ college, but there is a difference between greed and need. There is a difference between making a good, honest living and engaging in questionable and unethical behavior and practices.
Sadly, dealing with all this nonsense is typical for a chronically ill person. It can leave you depressed, anxious, angry, lonely, afraid and defeated. We must work together to end harmful behavior being done to the chronically ill, the disabled and the underdogs, while holding those at the top accountable.
Whether you’re a doctor or run a support group — be kind. It costs nothing.