Strings attached Support Meeting

[Hobbits]

I’m from Canada and there are very few resources that provide support meetings for Crohns that you can attend. I prefer a in person support group to social media.

The Canadian Crohns and Colitis Society are huge. They have a website, offer lots of information to read. They also have monthly support groups.

I have been to a few support meetings. The first hour is chit chat among attendees, the second hour is all about hitting up friends and family to raise money for the charity and how you plan to volunteer for the society. Every meeting is run this way, one meeting was 1/2 actual chat, with no Chairperson leading. You basically turn to your neighbour and start a conversation with a stranger, and various conversations are going on at the same time. Then for next 1 1/2 hours the Chairperson finally got involved trying to get volunteers to organize the next fundraiser. There were more charity workers at the meeting, then there was people with Crohns. There was a Chairperson, the treasurer, the treasurers spouse, the record keeper, and two moms who did not have disease, only myself and one other person actually had disease. It’s clear they don’t care about people, just what they can get from them. I left that meeting all stressed out and knew I would never return.

I have tried different meetings at alternate locations. The Chairpersons were professional there and it’s run proper, with an agenda, an introduction, ice breakers and a chance for everyone to talk. Again the last hour is what can you do for them.

Being newly diagnosed with Crohns and managing to hold onto a full time job by the seat of my pants is completely overwhelming. Now on top of that I’m expected to volunteer and collect money. I don’t even have time to clean my house, and some days even take a shower.

With all this said I am volunteering this summer with them with a fundraiser, as I will do what I can to help the cause. But what I don’t like is that you can not get support without getting pressured to raise money.

So it seems there are strings attached in order to get support.

On the opposite end, I also have Rheumatoid Arthritis. Canadian Arthritis Society is also a charity, but the operate very different.

There are also many groups I have had support from and met great new friends, heaps of education and material. I felt supported and not taken advantage of.

I have noticed that very, very few people with Crohns go to support meetings....where as many, many go to RA support meetings. I also find it in social media. It’s like no one wants to talk about Crohns, and suffers in silence.

I think part of the reason I have accepted my RA but having such emotional trouble accepting my Crohns is there is no where to go for emotional support for Crohns. Very thankful for sites like this, by far the very best. Also the NRAS section of Health Unlocked for RA is exceptional!

[Valbaty54]

Here in the UK, Crohns and Colitis UK is an excellent source of info. They also raise funds for research with national campaigns and local events. I recently went to a local branch meeting for the first time - a good chance to meet local sufferers! The meetings are almost always led by a gastro consultant from the hospital I attend, to talk on a specific topic or have an open forum for questions. My IBD nurse was there too, in her own time. Fundraising events coming up were mentioned, but I didn't feel pressured to get my purse out!

[Hobbits in reply to Valbaty54]

This is wonderful to hear, it sounds like they are doing it right! A meeting should be a place of emotional comfort and information sharing.