Editor's note: Linda Rockey is a Mayo Clinic employee who provides administrative support to researchers. Before becoming a Mayo employee, she was a Mayo Clinic patient for 35 years, a story which she tells here.
I would like to encourage all patients to seek out a support group for the medical condition you are dealing with. Ask your medical professionals if they know of any in your area. If there is not one, consider starting your own. While I had read all the books and brochures I could find for Crohn's disease, I needed other patients to connect with.
One day my gastroenterologist in Michigan suggested I start a Crohn's & Colitis Foundation of America chapter in my county in Michigan. I contacted the national CCFA and was happy to facilitate a monthly meeting for 12 years. I realized that a big part of getting patients to attend a support group is to educate the public and the best way to do that is fundraising. The media is happy to talk to you if you are taking action but are unlikely to promote a group just because you are looking for members.
I know that being an advocate to these members was important to them but I benefited from it as well. Finding a way to be proactive is good for your health. Rather than let the disease/illness have power over you, this is a good way to know as much about your medical condition as possible and to use that knowledge to help others. While your family and friends can be sympathetic it is not the same as sitting with other people dealing with the same medical condition.