A good patient organization is almost like a trade union. It fights for the interest of it's members in all possible arenas, it works politically, supports scientific research, participates in medical conferences, spreads information about the ailments it represents, organizes lectures for health care workers and support groups for patients and caretakers. But in a big organization the personal contact may be lost.
Personally I have a variety of painful conditions, so at last count I qualified for membership in at least eight different patient organizations. Obviously I can't participate in all of these, so I have chosen two which I believe are able to represent my interests in the best possible way. I am not a very active member, but when I need help, I know where to call. In some cases, the organization which represents your diagnosis most specifically may not be the best one for you. They may have a policy or understanding of your disease or treatment that you don't agree with, or it may be a question of personal chemistry. Don't be afraid to see beyond your diagnosis when choosing what organization to join.
Because the chronic pain community in Norway is still relatively small and we seem to be way behind other countries when it comes to research and understanding of chronic pain, I have joined an American organization for chronic pain patients, the US Pain Foundation (which used to be called CT Pain Foundation). They are superb when it comes to providing a caring support network with people who really understand the challenges of living with chronic pain.
In Norway I have chosen Revmatikerforbundet, a strong organization that works very professionally to represent the interests of people with all kinds of rheumatic disease. They have a quite high yearly membership fee, but as I say, they function like a trade union and they are extremely effective in representing and fighting for their members politically, so they are more than worth the fee.
The US Pain Foundation is a non profit that has no fees for membership, so if you suffer from chronic pain I absolutely advice you to join their facebook group and follow their e-newsletter.
The combination of having one large organization that represents me politically and one interest group with individuals I can relate to is a good solution for me, and means my needs are met.
How about you? Where can you find the support you need, and who will fight for your rights when you are too weak?