Alright, guys. I need to draw some boundaries.
I am pretty straight with you guys about my life and my health. There are some personal things I don’t share. I don’t feel that I should have to exchange my right to privacy because I write a blog where I answer questions about mast cell disease.
Being as the mast cell community is fairly small, a lot of us know each other. Mostly, we know each other online, which means that we often don’t have a complete understanding of the other person’s life and illness. There is a tendency to compare ourselves to each other, but this is inherently problematic for a bunch of reasons I don’t need to rehash.
I found out this week that a patient was upset that one of my providers wouldn’t let them do X thing and complained that it wasn’t fair because they know Lisa Klimas is allowed to do it. That really irritated me for several reasons. I don’t feel that it is appropriate for people who aren’t my health care proxies to talk to my providers about my care. If you want to tell them you read something on my blog, or tell them you know me, that’s fine. But when you are trying to include how I manage my healthcare in a conversation with one of my providers, it’s not acceptable. So don’t do it.
When you belong to a community like ours, we often develop a sense of intimacy with each other very quickly. In the real world, you develop intimacy alongside trust and mutual respect, but this online world of mast cell bonanza tends to move faster than that. What that means is that, unfortunately, not everyone understands the responsibility that comes with knowing this intimate information. Some people prove themselves to not be trustworthy.
I like answering questions. I like helping people if I can. I like writing this blog. You are not bothering me by asking me questions. But in the last couple of months, there have been a few instances where I have felt people were trying to take advantage of me. One person sent me a question in a Facebook message while I was in Seattle and then sent me a second angry message when I didn’t answer their question quickly enough for them. There have also been multiple times in the last month or so when I was publicly demeaned by a person online only to have them want me to answer their questions afterward.
Please keep in mind that I am a person. A sick person. I am happy to be a resource for people with mast cell disease and I don’t mind researching topics or whatever. I like doing that stuff. But if you are going to expect me to help you, you can’t treat me poorly. I don’t need anybody to kiss my ass, I’m just looking for general courtesy here. A lot of people can attest to the fact that I don’t mind answering questions in the middle of the night or calling people to explain things in detail. I don’t mind doing these things. I just don’t think I should have to do that for people who call me names. I don’t think that is too much to ask.
I’m going to be more vigilant moving forward about the information I share in the forums as pertains to my own care. I didn’t “get in trouble” or anything, but frankly I find the whole exchange of “but you let Lisa” to be really creepy. It’s not something I want to happen again, so I’m drawing some boundaries.
Please believe me when I say that it’s fine to ask questions and request blog topics. I hope you guys understand where I’m coming from on this.