Despite my prolific use of Facebook you won’t find me in any Facebook support groups – by choice. While some people have found excellent support from such groups, I have found several problems with such groups. Let’s start with the legal one at first. Many of the people moderating these groups aren’t professionals and do not have training. This leads me to the second problem because they do no have training bad behaviors are enabled and some people are attacked for voicing a different opinion than the group.
One of the most prevalent bad behaviors that I see is people using their illness as an excuse to treat others like crap. I try hard not to treat people like crap even when I am in pain. Do I fail sometimes? Of course. But is it an excuse – NO! That means when I fail I don’t see myself as a victim when people react in anger and I apologize. I have found for myself that it’s best to warm people that I’m cranky or not feeling well so they know to treat lightly. But in groups I have seen behaviors such as sending scathing reviews of products to companies justified. I have seen mistreatment of spouses and children as justified. I have seen being rude to customer service as justified. Then these people turn to this group as the victims and people will comfort them.
Another bad behavior I have seen is the victim mentality. I have heard people say – unless you have chronic illness you cannot understand and therefore you will always mistreat us. First off, I agree that many without chronic illness can’t fully understand and will at one point or another slip up, but there are people who genuinely care. My fiance does not have chronic illness, but he takes better care of me than I do myself. My dad has defended me at times and my dad and stepmother have been extremely patient when my stomach acts up. I have friends who realize what I fighter I am. One person can’t be your everything. You will need to be nice to them and if you are one of the people above who justifies bad behavior with your illness – you won’t have a very good support system. This is why I wonder when people tell me that someone is always mean to them. What have they done to bring it on? Sometimes it really is nothing they’ve done and the people around them are jackasses.
Another reason I will not be found in support groups on Facebook is people don’t know what they are talking too. If someone shows a symptom in a Facebook group, there is mass hysteria. You could say you have a hangnail that really hurts and within five minutes someone has diagnosed you with cancer or Lyme Disease. Yes, Lyme Disease. That tends to be a pretty common diagnosis in groups. Some people also advise you not to listen to your doctor. Be wary of people like that! They have no formal training and 8 times out of 10 your doctor knows better for you than a random stranger on facebook who has no idea of your history. Here are some examples of sound advice you should get in a Facebook group and sometimes do:
1. Call you doctor about any new or worsening symptoms.
2. Follow your doctor’s orders
3. If your doctor is not returning your phone calls, ask for help from Patient Advocacy. (do not call them and ‘bitch them out.’
And if you are giving a diagnosis the best thing to say is:
1. I am not a doctor, but perhaps your symptoms could be X, Y or Z. Have you looked into it and have you talked to your doctor.
2. Your symptoms sound similar to X, Y and Z, but you’d need to talk to your doctor to know for sure as I’m not medically trained (or if you are medically trained…I don’t know your medical history.)
If you are looking for support for your chronic illness Look at a sight like this.
or contact your doctor, the hospital or a social worker for ideas.
You may even be able to find online support from groups related directly to your illness such as American Cancer Society. Here is an article that will help you even more than I can.