My favorite resources for RA and other invisible illnesses
Keeping It Real with Arthritis / book
This book is a compilation of 100 arthritis stories from around the world. My story is included, along with other moving and transparent descriptions about life with rheumatoid arthritis and other chronic illnesses. You’ll enjoy reading the accounts and will be moved by the honesty and detail of every day life with chronic illness. Available in print and Kindle editions.
Patients Rising Foundation
Patients Rising is a non-profit patient advocacy group whose mission is to help patients access the care and pharmaceuticals they need for their journeys. They have tons of education resources (I’m a teacher/facilitator with them), and a Concierge service that taps into meeting needs and referring to available resources for patients everywhere.
Creaky Joints
This is one of my very favorite support sites for all things arthritis and pain. Seth Ginsberg has done a great job in bringing the RA and chronic pain community together, creating synergy, and affecting positive change. I particularly like to read his advocacy section, so be sure to check that out. There are also medication coupon resources under “support,” consider looking at that also. Love, love, love this site!
Dysautonomia International
When we hear of autoimmune disorders, dysautonomia isn’t one that comes to mind as quickly as others like Rheumatoid Arthritis or Lupus. But dysautonomia is a real part of some illnesses like Sjogrens. I first heard of dysautonomia from my cardiodlogist and have been seen at the Vanderbilt Dysautonomia Clinic since 2014. The international dysautonomia organization is a great resource for researching dysautonomic conditions, learn how they work, the different kinds of DysA, and the latest current medical and legislative work in the area of autonomic dysfunction.
the National Arthritis Foundation
This is another great site and source of tremendous support for arthritis patients and families. All forms of arthritis are discussed here, not just rheumatoid and auto-immune arthritis. While invisible illnesses like lupus, Sjogren’s and dysautonomia aren’t the main focus of the site, there are lots of resources either on these disorders specifically, or which could easily be applied to the challenges these other AI’s present. I’ve spoken with some of their association team leaders, and they are very helpful and quite passionate about their purpose. As an RA patient, I find that extremely encouraging, and I draw comfort from knowing that they are advocating on my behalf at the local, state and national levels.
RheumatoidArthritis.net
This is a decent site with lots of good information. Many different chronic illnesses are addressed, so if you have a chronic diagnosis that’s kind of out of the box, this might be a great resource. There do seem to be a good bit more advertisements on this site, which I find cumbersome, but if you can get past that, there are some good articles on getting diagnosed, chronic pain and mental health, etc.
