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Life in the middle pt 2: Support groups

August 24, 2011

See? I said I’d get around to part 2.

Anyway: support groups. Such a love-hate relationship. Some are better than others (there is one that I have never had problems with, another that constantly makes want to beat someone with a medical journal). Regardless of which group though, they can be very good and equally bad.

The Good

They can be a fantastic resource for patients. On top of just being able to talk to other people that really understand what all the physical and emotional aspects of an illness feel like, other patients can give you tips on how to deal with certain symptoms without pharmaceuticals. They can help you find humour in the illness (which is always a good thing) and commiserate with you when you’re down in the dumps. They can also offer a mental boost by giving you the chance to help other patients. They’re usually pretty good with keeping up with the latest news in regards to treatments and research.

The Bad

Depending on the group, you may have to wade through an ocean of con artists, bullies, misinformation, and paranoia. You may have to deal with people posing as patients to sell you products that you don’t need and have never been proven to help you, patients that have become so disillusioned by the medical community their minds have been swallowed by conspiracy theories (these ones usually push people to stop taking all pharmaceuticals regardless of their condition), and patients that hear a snippet of information from a friend of a friend of a friend who’s cousin’s aunt saw a 5 second preview of one of those HORRIBLE “medical” shows like Dr. Oz (ooo don’t get me started on that asshat) and presents that information as fact.

The Middle

Being in the middle of the diagnosis maze makes joining support groups a bit different. Personally, I have never been discriminated against by other patients but I have heard of it happening (“you don’t have a piece of paper signed by an MD with a diagnosis so you do not belong here”). Although I’ve never had another patient insinuate or flat out state that I do not belong in a particular group because of my stage in the maze, the lack of a diagnosis does seem to chip away at the sense of belonging a bit sometimes. When I’m having a particularly bad day that fractured sense of belonging can quickly spiral into jealousy, especially when discussing treatments. It’s one thing to be able to talk to someone who experiences the same symptoms as you, it’s another to talk to someone who has those symptoms under control with medication that you cannot take yet because of the wait for further testing (“it’s not fair that I have to suffer through this on my own and they don’t”). I’ve found myself getting angry and feeling personally insulted by people that have been prescribed disease modifying drugs and refuse to take them.

It can also cause a bit of hesitation in finding humour in your situation out of concern for offending other patients. I remember waiting to leave for a visit to the doctor and a conversation had come up in an online support group “You know you have MS when…”. People were filling in the blanks with all kinds of things; some really funny, others a little sad, but mainly funny. I got a good laugh out of some of the responses and related to some of them really well (especially comments about cog fog, as that was a major problem for me at the time). I had been worrying about the appointment but all those comments helped me loosen up and relax. I started to think of a few (ok, a lot) myself and started posting them. I stopped at one point and thought “is someone going to take this the wrong way? should I be doing this? will the others find these funny and relatable or are they offensive since I don’t have a definite diagnosis? will these comments be taken in jest like they are intended to be taken, or will they be seen as me making fun of others?” In the end no one seemed to mind and more jokes kept rolling in. But still, that bit of hesitation was a reminder that I’m still on the outside looking in. I’m not really going to touch on the con artists and paranoia as I’ve already went off on that sort of thing before.

I try to stay positive and helpful in groups. When I’m feeling pretty negative I shy away from them because well, I like to argue so I can’t resist the urge to rip into the bullies and con artists and I just end up wanting to snap at people because of the jealousy and such. Will that change if I finally get a diagnosis? Who knows. It sure would be nice to be able to turn to those groups when I’m feeling that low, but for now I just can’t.

If you’re thinking of joining a support group, please keep in mind that it will not be all rainbows and sunshine. You will hear a lot from depressed patients and whatnot; that’s what those groups are for really. If seeing someone else struggle gets you down, a support group may not be for you. Make sure you check facts. Do not rely on other peoples’ claims and experiences. Look up studies from reputable sources, read them thoroughly, and talk to your health care provider about them. Even if a certain treatment works well for others and has documented proof that it can be effective, that does not automatically mean you are guaranteed a positive experience with that treatment. Also, try to give back. If someone is reaching out and you feel you have something to offer that may be helpful, do so.

 

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