Well-meaning people direct me to online support groups all of the time. Why don’t they work for me? Because I’m a snob.
A couple of days ago, I was summoned across the street to my sister’s place of business, because one of her co-workers knew an artist’s husband very recently had had brain surgery, and thought it might be beneficial for us to visit. As luck would have it, I had just finished showering and slapping on some makeup, so it wasn’t a big deal to finish getting my clothes and wig on to hobble across the street. When I walked in the door, I immediately recognized the woman. We had briefly visited during a previous show at the gallery. She and her husband were very pleased with the surgeon and her husband’s recovery, so I got the name of that doctor and another from her.
However, she looked over the top of her glasses at me and started with, “Have you gone to a chiropractor?“ Yes, I explained, many times, and they did absolutely nothing for me. She wanted to know if I had gone to an herbalist. Yes, again, I sighed wearily, I had, and I’m taking supplements out the wazoo, because I need to, because my diet is very restricted. But they don’t make me better. My issue is mechanical and I need surgery. Then she wanted to know if I had tried the Chinese herbalists next door. I held up my hand and said that I’m very good at researching and am 1 to 7 years ahead of everyone else’s suggestions, so there’s no need to make suggestions. Then she moved to food. Was I juicing? I really needed to juice everything! I said no. She started listing everything I should be eating, so I started cutting her off, telling her that each item caused a release of histamines, so it was actually dangerous for me. (Plus, with the few things I can still eat, why would I juice??? I get so little fiber now, and juicing removes most of the fiber.) Did I try an accupuncturist? Again, yes, and they did nothing for me. I know, I know, hard to believe.
God, I hate getting advice, especially when I don’t say, “Give me advice, I have no idea what to do or where to look.” She did write down the name of her otolaryngologist surgeon, whose specialty is cancer tumors of the head and neck. I’m still going to contact him. My tumor is not cancerous and he may not want to deal with it because it will probably grow back, but it’s worth asking him. However, I may be blacklisted because of my negative encounters with three other doctors within the same university system who said my problems were psychosomatic.
So, back to support groups: I hate them. I also can’t keep my mouth shut. One week, someone posted something about how she wished our rare disease doctor would team up with another doctor who researches the same disease. Unfortunately, the other doctor doesn’t have a license, so he can’t see other patients. I pointed this out. She said fine, then everyone needs to take care of themselves and stop smoking so they’re not on oxygen. That really pissed me off because the majority of us in the group can barely eat any foods safely because we’re always dealing with hives, have a really hard time finding medicines that don’t cause hives/asthma/anaphylaxis, and don’t smoke. I’m fucking allergic to smoke. I told her she was lecturing the wrong group. Other people got pissed off too. But then another person singled me out and told me to tone it down, and then it just went downhill from there. I was told that I should have just kept scrolling if I didn’t like what I saw. Then the original poster said she didn’t know that doctors needed licenses and not everyone knows that. I got so angry that I said that the leading doctor in this field most likely already considered the option of teaming up with other leaders, but they were in situations he was trying to get away from, so it was a moot point, and we should use common sense.
I admit it, I’m a snob. (For some reason, the woman who was trolling me told me that I was going off on a tangent because of that last remark. I told her that there was nothing that I was saying that was off topic, and I was responding to everything she and the OP were saying. I don’t think she understood what “tangent” meant.)
I’ve talked about this with my counselor. She agrees with me that a group setting isn’t what suits me best. I tend to steamroll people. Just today, someone in a group asked, “How many of you have NOT had _______?” and a bunch of people said “I didn’t,” but then a bunch of other people said, “Oh, I did, and it was like this and this and that.” So I wrote a message saying, “So, I thought this was about people who didn’t?” I got a reply that basically said that people wanted to share no matter what the question was.
Why don’t those fuckers write their own blogs if they’ve got so much to share?
3 thoughts on “Oh Ye Of Little Patience”
Oh my gosh, don’t get me started. I know you wanted to just slap that woman who was giving you all that unsolicited advice. I would have….I wouldn’t have literally slapped her, but I would have wanted to. 🙂
I can’t do support groups either. I’ve tried groups for vertigo and migraines, people either want to just whine, or they want to try to fix each other by giving medical advice and such nonsense. nonono, I won’t be part of that.
There’s just one group I’m part of, it’s a photography group for those with chronic pain or illness. Very supportive, small group. I’ve never had anyone try to fix me.
Your blogging family accepts you just the way you are.
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Thank you, Wendy! You’re THE BEST! I’m watching the groups just to keep an eye on medications and doctors specifically in my area, but I do want to slap, and slap often. Everyone. Thank you. ❤ Trying really hard to be civil to the IRL people. 🙂
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lot of reasons why I lurk or do one-to-one communication. I occasionally will give input on a public FB group for my rare diseases if it’s a question I’m not sure someone will answer. The three exceptions are my “unofficial” hospital transplant support group, a group with a lot of my young friends with chronic illness in it, & my local NaNoWriMo writing group. These are pretty much all people I know or have meet IRL or at minimum via Skype through mutual friends or through writing & other interests so it’s not just random people thrown together. That’s three out of about a dozen that are actually helpful (probably because of the IRL friendship factor). I only had one issue w/my transplant group & it was someone who was coming down hard on people w/unsolicited & bad advice. That got nipped quick. So it can work, but this was also after a lot of bad experiences with groups.
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