Heather has lived as a medical mystery with multiple complex chronic illnesses since childhood. Her precise diagnosis has changed many times over the years, in part because her rheumatologist thinks she likely has multiple systemic autoimmune/autoinflammatory diseases (see Hickam’s dictum) and also because her primary conditions are best classified as rare diseases: Systemic Juvenile Idiopathic Arthritis (also referred to in adults as Still’s Disease), and Dermatomyositis. In addition, she also lives with numerous related conditions including portal hypertension with varices due to nodular regenerative hyperplasia (liver disease), a chronic pelvic fracture resulting from steroid induced osteoporosis, endometriosis, a chronic persistent CMV infection, migraines, inflammatory spondylitis, gastroparesis, IBD arising from her systemic autoimmune and auto inflammatory diseases, a form of acquired immunodeficiency – hypogammaglobulinemia, anxiety, medical PTSD and more. She shares this list of conditions here and on her social media in order to connect with others who may be dealing with similar issues and looking for support!
Suggestions for healthcare providers:
Having the providers have more time with patients. I’m not sure what in the system needs to change to make that happen but I know that it’s not the physicians themselves who are not creating the limitations on time. I know doctors who want to spend more time with their patients and they can’t, so there’s something higher up in the system that needs to change.
Suggestions for government:
The government can continue to provide better services for transportation for disabled people, to advertise those services in a way that people are going to see them. That would make a huge difference. So many people don’t know of the services that are already there because they are being marketed more toward the senior population.
Suggestions for decision-makers:
I think we need to have more collaborative discussions between people who advocate for the current insurance system, that we have here in the U.S and a system like they have in Canada and say ok what are the problems with both systems and how can we create some kind of new idea that we haven’t come up with yet that’s going to allow people with serious chronic illness to get access to a specialist without long wait times but also allow people with common ailments to have regular access to preventative healthcare that is affordable.
Unfortunately, anyone can be ill or disabled so these issues about healthcare, they’re important, they affect everyone. You may be healthy right now but unfortunately, you or someone you love may not be that way. It doesn’t matter how old they are, it doesn’t matter what their race, gender, ethnicity is you can be affected. Don’t pass judgment on those that you encounter who may be chronically ill or disabled. Be mindful of the fact that it could affect anyone when you’re thinking about issues related to healthcare or insurance. and the political area as well.
The overall message to society:
I think the number one thing patients that are chronically ill can do is to start sharing their stories. I think that individual stories are the most persuasive thing that we have. If everyone begins to share a little bit about themselves and their experience with just one person or with thousands through a social media account, then people will begin to get a little bit of a window into what life is like for people like us. Gradually we’ll be able to create a shift in what society thinks it means to be disabled or chronically ill.