I’ve been putting off writing this post for the better part of July. I’ve even contemplated not writing the post at all. I do not like politics. My opinion is that politics do not belong in healthcare. This doesn’t change the fact that politics do exist in the medical community especially when it concerns large institutions. I also am not going to pretend that I know everything there is to know about the current uproar in the mast cell community, or the problems with our healthcare system which is a complete failure for chronic illness in general. But the one thing that I do know for sure, is that you do not bite the hand that feeds you. Especially when that hand may be the last hope for so many. I also do not like seeing people mistreated, personally attacked, bullied, or falsely accused. And there has been a whole lot of that going on lately in the mast cell disease forums. With that said, everyone has the right to their own opinion provided that opinion is constructive and not bullying in nature.
The last several weeks have been extremely disturbing to me in the mast cell community. I have been disgusted by what is happening, and I have even lost sleep over it. I have tried my best to stay out of the forums because upset causes more reactions. And the last thing I need right now is more reactions. To accurately share where I am coming from, I will give you a little bit of my story so you understand the viewpoint that I am coming from.
The mast cell community is a very small one. Mast cell disease is rare. However, if you’ve done much reading at all, you know that Mast Cell Activation Syndrome is a lot more prevalent than originally thought. I, myself, have been trying to get an accurate mast cell disease diagnosis since 2015, when I first stumbled across it when researching my symptoms on the internet. In 2016, I went to what is supposed to be a “Mast Cell Research Center”. I had a very bad experience with the Allergy & Immunology department. To describe the experience as unhelpful is an understatement. Up until this bad experience, I was in two online support groups. I deliberately avoided the support groups that were not “mainstream”. I also made sure to educate myself with accurate peer reviewed information. I did this because I wanted to have a well informed understanding. I also wanted to know what the top mast cell disease “experts” opinions were. It didn’t take long before it became pretty clear that there are strong conflicting opinions between the “experts”. Even more confusing, I discovered, is the fact there is some information being put out by the top mainstream support group without detailed explanations to back up some of this information. I have found this to be extremely frustrating, as I have very specific questions regarding different aspects of diagnosis and testing. I am someone who likes to know the “why” behind everything. Memorizing “facts” does not work for me. The more details I have, the better I learn and understand. I guess this is the scientist in me (I was a biology major prior to switching to nursing).
For quite some time now, I have felt that vital information was being censored by this “mainstream” group. The group really pushes one institution in particular, and it is the institution that I had a bad experience with. Because of this group labeling the particular institution that I went to as a “Mast Cell Research Center”, I had high expectations that when I went there I would finally get an accurate diagnosis and the help that I needed. When this didn’t happen it was earth shattering. I have never felt as defeated in my entire life as this place made me feel. While I was going through the process of being a patient at this particular institution, I learned there were a lot of things that did not add up. There were statements made that were in direct contrast with what I had studied and read. I picked up on the fact that whatever you do when you go there, you are not to mention certain names or things that you have read. Realizing this and seeing politics at play was very disheartening. So this brings up a very VALID point. I did myself a disservice by not digging deep enough to get past the “mainstream”. I have read patient story after story exactly like mine. I’ve even seen patients state the exact same statements and garbage can diagnosis that were said to me, so much so that I have no doubt they saw the same physician I saw. By focusing on “facts” and not reading up on patient experiences, I was completely unprepared by the mountain I faced when I went to this particular institution undiagnosed. I fully believe that your best arm of defense when choosing a doctor or a facility is to consider absolutely every single piece of information you can get your hands on. When you start seeing a pattern there must be some truth there. This is my viewpoint and where I am coming from, and it is why I branched out to other support groups after the bad experience I had.
Support groups have pros and cons. They are only as good as the leaders who manage them. I am not going to mention names or any particular group, but if you are a part of these communities you can easily guess who and what I am talking about. After getting no where at the “Mast Cell Research Center” which is advertised as taking undiagnosed suspected mast cell disease patients, I called and got put on a waiting list for an appointment with a doctor that is thought very highly of in the mast cell disease community. I’ve read the physician’s book, and have found it extremely helpful in learning about mast cell disease. Up until a few weeks ago, I have not read one single negative comment about this doctor by any patient. All the patient testimonies I have heard has been extremely positive. I feel that this doctor is truly my last hope, and I will do whatever I have to do to see this particular physician. In the forums, everyone had been waiting on news as to where this physician was moving to. When the information came out, there was a group that went on a horrific soap box rant running this physician through the mud questioning his agenda all because the new facility will not be accepting health insurance. Vicious rumors, scandalous accusations, and hateful comments abounded. The irony of it all, is this particular group calls themselves “friends” of this physician. And the run away train did not stop there, it snowballed into an even worse situation when someone introduced their self to the group as being a “colleague” of the physician, that this highly sought after physician is partnering up with to open a new mast cell facility. Cyber bullying immediately commenced faster than admins could address it. There is not a single group of the mast cell patient community that this has not touched. It has been devastating to watch. People are talking about a great divide and sides in the mast cell community. This is not what we need. We need help, not a civil war. Have there been valid complaints? Yes, I believe so. I was upset by the fact that two individuals were allowed to become members of the group without admin letting the group know. By their own admission, these individuals had been in the group for months. It is concerning because these type of support groups are supposed to be private and a safe place to discuss experiences and ask questions. The current situation has definitely made me think twice about posting anything at all. I’ve seen people post actual copies of their test results. I think that is very unwise. Even though these are closed “private” groups, you should never post anything online that you would not want shared with the world. The situation definitely serves as an example and warning. I do not believe that the two individuals that joined the group did anything wrong. They received permission from admin. If anyone is at fault, it is the admin who started the group and allowed them to become members without disclosing it to the rest of the group. With that said, I have found invaluable information since branching out that I wished I had known a year ago. It would have saved me thousands of dollars and precious time.
I have learned a lot, and I hope that what I have learned so far can help someone else by sharing it with others. Unfortunately, politics play a huge role in heath care and it is extremely important to stay well informed. Arm yourself with as much information as possible to make the best decisions you can at that point in time. When you have knowledge of something that is wrong and you do not speak up against it, you are playing a part in allowing it to continue. No one is perfect, and everyone makes mistakes. Instead of knocking people down, we should be lifting them up. After all that is what support groups are all about. It is my opinion that no one ever accomplishes anything worthwhile without facing a lot of adversity. I believe, as upsetting as it is to watch, that is what we are witnessing in the mast cell community.