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Support Group Stuck: Living with multiple complex cconditions
I find myself stuck.
After a decade of chronic illnesses slowly dismantling my life, and the last three years keeping me more in my regional speciality/academic medical hub than at home, I’ve had three major surgeries and more “minor” procedures, scans, tests, and transfusions than I would care to remember.
I’m home, rebuilding my physical, relational, and mental health. On disability for the moment, trying to determine what comes next at 44 and piece together how this new “custom” body feels, and how I feel about everything now that I’m not fighting every moment to stay alive. I talk to the nice people at mental health who are trying so hard but have little idea what to do with me (it’s very rural mental health and we’re lucky to have as much as we do), and attend online support groups where I carefully maneuver to share last so no one has to go after me—even when I never share everything. Because there are liver groups, transplant groups, new job groups, etc. but none that I’ve found that address what happens when you cross all these lines and you’re always the “special” one at whatever group you attend. So you end up educating, answering questions, helping others feel better about their road ahead, but leaving knowing you helped, but no one understood you.
So I wonder if hidden somewhere there is a group for complex patients who are taking the day off educating and answering questions—as wonderful as that is to do—and are instead listening to each other?
Any resources welcomed.
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I was very intrigued by your post, it’s truly quite unique, you’re without a doubt a very intelligent individual. I’m thinking that perhaps groups are not the best choice for you unless of course you’re enjoying the help that you provide for others, there’s a wealth of rewards and gratification in doing so, this could also be helpful for your own personal needs. If you had chosen this path for your livelihood you might have found it less gratifying, it’s hard to say, in my own limited experience I would say that if this isn’t what you want then maybe a one on one therapy session is better for your mental and physical well being, this is just my thought and I hope that it helps you to find your best options.
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1 Reaction@fraaron, like @frouke, I read your post with great interest. I want to first clarify. Are you talking about scheduled online support groups where you meet with people by video?
From your profile, I read that you live with:
Liver Transplant, Total Colectomy (Ileostomy), Total Proctectomy, Ulcerative Colitis, Autoimmune Hepatitis (AIH), Primary Sclerosing Cholangitis (PSC), Thyroid Disease (Hashimoto’s)
As a moderator, I am able to add your discussion to the related forums, such as Autoimmune Diseases, Liver Diseases, Ostomy and Transplants as well as Just Want to Talk.
Are there members here on Mayo Clinic Connect that have the same multiple conditions? Maybe. Maybe not. But I can tell that there are many members who live with multiple, complex conditions such as @rosemarya @gingerw @susanf8 and many others.
@fraaron, I'd like to learn more about your story. You mention dealing with mental health and living with complex conditions. What helps you take care of your mental health? What challenges are you dealing with?
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3 ReactionsAs people age, they often have at least a few health issues, and some have many in very different body systems…some combos are more common like diabetes and heart trouble, or osteoporosis and kidney problems, just to name a few. It is a balancing act, and i discover helpful elements on Mayo Connect, so I have better questions for doctors and so I have the courage to ask those questions in better ways !
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