Chronic Illness: Helpful Links |
Before writing this text, I already knew many helpful links relating to the diagnosis I’ve been given: Chronic Fatigue Syndrome – also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephomyalitis (M/E). CFS is not to be confused with chronic fatigue. Chronic fatigue can be frustrating, but it responds to several night’s good sleep. CFS does not. As fellow-sufferer, Seabiscuit author Laura Hillenbrand, said in Newsweek: “Fatigue is to this illness what a match is to a nuclear bomb.” Since becoming sick, I’ve found invaluable information at websites such as the CFIDS Association of America (http://www.cfids.org/).
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My research on the Internet reveals that there are multiple online resources for each and every chronic illness and chronic condition. (Some examples: alzheimer’s, arthritis, asthma, cancer, crohns and colitis, chronic pain, depression, diabetes, fibromyalgia, heart disease, hepatitis, HIV/AIDS, hypertension, lupus, migraines, multiple sclerosis, osteoporosis … the list goes on, of course.) Just enter the name of the illness or condition that you or your loved one suffers from into Google or any “search engine,” and you’ll find national non-profit associations and organizations that can help with every facet of the illness. These websites can provide everything from treatment options, to online communities where you can “chat” with other people, to listings of support groups in your geographic area. |
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In addition, whatever your illness or condition, if you think you’d benefit from connecting more personally with those who are similarly sick, even if you don’t blog yourself (I don’t), there is an international online community waiting for you to join. Finding just one helpful blog can connect you with others. Here’s how. Look at the sidebar on the blog you’re reading. The blogger will have labelled the sidebar something like “Blogs I follow” or “Other links” and there you’ll find a ready-made list! Here’s a link to a wonderful award-winning blog, "Learning to Live with CFS,” written by Sue Jackson. If you suffer from CFS, it’s the only connection you’ll need to find yourself right in the middle of a supportive community: http://livewithcfs.blogspot.com/
To find non-CFS blogs, use Google or another search engine, and this time enter the word “blog” along with the particular illness or condition. I recommend that you “hang out” with the choices for a few days (remember that you can find new blogs by looking at the sidebar on the blog you’re reading). Then settle on a few whose authors feel like kindred spirits. Once you start posting comments, you’ll instantly be a member of a community of people who share the unique problems posed by your or your loved one’s illness and who are ready to help and support you. |
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There are also websites that have become thriving online communities. My two favorites are www.ChronicBabe.com, founded by Jenni Prokopy "for babes who happen to have chronic illness”; and www.BuddhaChickLife.com, founded by Jan Lundy to help us cultivate "inner calm, clarity, and wisdom."
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Finally, there are many valuable online resources for caregivers. Here are a few:
Today’s Caregiver is an online magazine (also available the old-fashioned way if you subscribe). The website offers many resources, including interviews with caregivers, articles by caregivers, a list of support groups around the U.S, and the opportunity to chat online with other caregivers:
http://www.caregiver.com
Family Caregiver Alliance provides a wealth of information on the challenges facing caregivers, including information and advice for coping with specific problems (like the silent plight of caregiver depression), support groups, and free e-newsletters on different topics related to caregiving:
http://www.caregiver.org
Empowering Caregivers has many resources including online communities that caregivers can be a part of through its message boards, forums, and chat rooms:
http://www.care-givers.com |
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The C. Everett Koop Institute at Dartmouth is a website devoted to teens with chronic illness. It includes many inspiring stories written by teens. The current listing includes stories by teens with diabetes, asthma, lymphocytic leukemia, Marfan’s Syndrome, Sjogren’s Syndrome, aplastic anemia, non-Hodgkins lymphoma, Crohn’s disease, Cystic Fibrosis. Often a teen’s story is followed by an essay by his or her parents. The site includes links to other websites for children and teens that focus on their specific illness or condition:
http://dms.dartmouth.edu/koop/resources/chronic_illness/
Well Spouse Association is an online community of support for spousal caregivers. You can also use it to connect with local support groups. I like their welcome message: “You are not alone: when one is sick…two need help.”
http://www.wellspouse.org/ |
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Sibling Support Project is an online community for brothers and sisters of people who have special health, developmental, or mental health concerns:
www.siblingsupport.org/
Medicare has a page that is dedicated to caregivers:
http://www.medicare.gov/caregivers/index.as |
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