Today we’ll be talking very briefly about support groups, where to find them, and what they can do for you. Of course friends and family are a great first line of support, but sometimes it is really difficult to get friends and family to understand what you’re going through. There is something really nice about talking to someone who really has been in the same situation you have, or felt the same symptoms, etc.
Support groups can mean different things to different people, but luckily there are options for where to get support.
There are those who wish to stay relatively anonymous, so for them an online support group may be good. There are a wide variety of support groups to be found online, and from many very reliable sources. My personal favorite is MPD Chat. A Google Group, run by a wonderful woman, Beverly. The group is extremely knowledgeable and supportive. What I like most about them is that they are specifically geared towards MPNs! There are other sources for online MPN Support groups as well, and you can find that information here.
There are also a wide variety of live and in person support groups that meet periodically.I had never been to one before until this past May, but it was such a fantastic experience, it inspired me to try and form a local group for patients in my neck of the woods. (If any of you are reading, I’m hopeful that our first meeting will be in October!!) If any of you have not yet gone, but do have the opportunity to attend a support group, I encourage you to try at least once! You might be surprised by what you find 🙂 It was so nice to finally be able to talk face to face with other patients. Until that meeting, I had really only met one or two other patients. It was so interesting to be able to talk about something I’ve experienced and have a whole room full of people say “I know what you mean!” rather than the blank stares I usually get from people! It was a nice feeling to finally really feel I’m not alone. Click here for more information on where to find support groups
That’s all for now, tomorrow we’ll be talking about the anatomy of a hem/onc appointment.
Until tomorrow,
Lina
The Life of a Vaguely Neurotic MPN Patient 
I have been an ET patient for over seven years and would love to join in on the MPD Chat group but when I tried to join the group it would not let me. It said I had to apply for membership to be a part of the group but would not take me anywhere to “apply”. How do I do this?
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Do you have a google account? I think that’s the first step. If that isn’t the issue, let me know. I’ll send you Beverly’s contact info in an e-mail and you can ask her for some help 🙂
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Thank you for the response. Yes I have a google account. Any additional help would be great.
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