Why should I join a myeloma support group?

[Music] what is a support group and how do I find one well support groups I think are kind of like your first line of defense they're like the pawns in a chess game that you know that that's where your education begins you you get myeloma and you're like a deer in the headlights I mean this is you look online and you know you look at all this stuff and they're talking about three to four years of life expectancy and you know one and a half to two years if you're high risk and you know there's so you know you're just overwhelmed with with with a kind of a doomsday scenario and you go to the support group meetings and you find that you can get an education that's part of becoming your own advocate but you can talk to people who've been around and had the disease for 10 15 20 years you can talk to those who have got great doctors and would recommend their doctor to you they'll be the first to tell you that you have to have a myeloma specialist on your team they provide you with information and understanding of the what can be as opposed to a doomsday scenario that you might get when you still look at your very first information on the internet a support group is a gathering of like-minded persons intent on educating themselves on a particular subject they're important because they have tremendous expertise you can find so much help from people who as I've said before have been there and done that if you're looking for answers to a particular treatment dilemma maybe you're having a side effect that's troubling you such as diarrhea I promise that you'll find out there's in a support group that have been there and they can tell you what treatments perhaps those reductions or hopes it's perhaps a drug that can counteract it but support groups or people just like you one thing that support groups are not are places where people come to whine and so many times men in particular have the misconception that support groups or whining groups they are not they are educational groups who gather together to know about their their disease so there are many types of support groups some might be focused on a particular disease some might be more general in nature such as a blood cancer support group which focuses on more than just say myeloma or they might focus on all cancers such as support groups from the American Cancer Society disease wise I think finding a myeloma specific support group is most beneficial for myeloma patients but then there are also support groups that might focus on other aspects of a cancer diagnosis these could be support groups that deal with psychological impacts of dealing with the cancer or they could be support groups that focus on exercise or nutritional information spiritual information there even support groups on complementary medicines in general living well with your disease I think probably the easiest way that I would know about is to go to the IMF international myeloma foundation's website they have a good listing for the various groups I think there's probably about a hundred and fifty across the United States alone and there are certainly others in other countries but I think the best place to find a support group would be the IMF website I think disease support groups can be located as I mentioned via the various disease websites and then organizations like the cancer support community and other organizations like that are a great source for other types of survivorship support groups and finally social workers if you have access to social workers in your area they can also help support groups to help meet your own needs look up the support groups in your state and and attend you could just be in a listening mode for a while but as you become more educated as you begin to hear experiences you'll begin to ask questions and it can be awfully helpful so if you're unable to attend a support group meeting there are other ways to be involved with other patients it can be done through Facebook groups smart patients comm allows you to ask questions and get answers LLS has an online chat forum that meets every Monday evening for myeloma patients and you can type in questions and get responses that way so there are ways to get to and interact with other patients even if you aren't able to be in a support group in-person a support group can give you loads of information at a good support group you'll find people who've done it a long time who studied this disease you'll also find people that are brand new to myeloma and have basic questions you'll find also that in time you'll be able to help other people and that's such a good feeling to help someone else learn about the disease that you've been dealing with a long time support groups have a lot of value [Music]