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Crowdsource Your Healthcare?

Updated: Feb 7, 2022

While many health care professionals battle burnout just trying to stay healthy at work, those of us who are not necessarily healthy are turning elsewhere to find answers amidst the pandemic.

Healthcare in 2022 will continue to struggle as many nurses, doctors and clinicians choose to leave the workforce, not only a part of the Great Resignation, but also from sheer exhaustion, or their personal choices following recent Supreme Court ruling upholding vaccination requirements for healthcare workers. They want to have a choice, and most importantly they deserve the right to be safe at work. If I had to go to a job where my life was at-risk every single day, it would be a short-lived role and it is completely understandable why there is a mass exitus.

On the other hand, those of us like myself who have been struggling with chronic illness, many long before COVID, are getting more and more frustrated by the lack of ‘care’ in healthcare. Being bumped out by people who are not taking care of themselves or the ‘herd’ as best as they could is impacting us negatively. We cannot access the same appointments and resources anymore during the pandemic chaos as the system is overburdened.

We do enjoy the newer options for telemedicine as an easier way for us to access care. We no longer have to try to figure out how we can get transportation to doctor appointments when we can no longer drive, or function optimally. I believe in 2022, we can hope to continue to see widespread use of telehealth. I hope federal policymakers will make permanent many of the policy changes enacted during COVID. Telehealth is working and has become popular with patients and providers alike.

But the overall U.S. medical system is broken and extremely hard to navigate for all patients, especially those with rare and chronic illness. That is why so many of us turn to our own patient advocacy efforts to sustain our levels of care. Today in an information-driven world, that means we can serve one another in online care communities and virtual support groups that typically focus on specific disease diagnoses. There are Discord servers, Slack channels, social media online communities and so much more available for people to seek support and potential guidance. Patients under pressure. Patients helping patients.

With rare chronic disorders being so hard to find specialists to diagnose and treat, we often turn to one another to source ideas, better manage our symptoms and to support one another in the difficult and sometimes disgruntling process. It is a state of dis-ease, meaning there is nothing easy about it!

The rise of community support for fellow chronically ill people can be a real lifeline. It is important to feel heard and understood, to see solutions that worked for other people (or didn’t), and to generate compassion for one another in a united struggle.

The takeaway for chronically ill people is there is hope. Your peers are out searching for answers and researching medical insights and clinical trials and other sources to find answers to better care for themselves. I have spent years researching and along with many others, and sometimes have found insights on proper diagnosis on my own. I believe we can no longer solely rely on just medical professionals.

Don’t get me wrong, I follow my doctor’s orders, but if he can only spend 15 minutes with me on a complex issue, I might reach out to 20,000 peers who could give me an idea, or just validate my question or concern. We may need more of this as the Great Resignation continues. The medical community is so overburdened and particularly not capable of helping people deal with chronic illnesses like the one I suffer with, Ehlers Danlos Syndrome (EDS).

My specialty neurosurgeon recently shared with me that he learned about connective tissue disorders like EDS only in a paragraph he had to memorize in medical school. That's it! Due to his own curiosity and seeing commonalities among his spinal patients, now he specializes in treating patients with hypermobile EDS. How can the landscape change so much in only a few years? What is the medical community missing? Why are they so slow to change to the needs of the revolving patient? These are questions that keep me up at night.

Here are few ways you can best advocate your yourself if you are chronically ill during these trying times:

  • Continue to be tenacious and resilient in the face of adversity we all face

  • Stay organized and document succinctly and clearly all facets of your medical condition with back up evidence and records to ease the time crunch time with key practitioners

  • Utilize wellness tactics at home including habits of self-care, mindfulness and regular movement to care for your body and mind in ways so you can to regulate your stress levels

  • Shout it out loud and proud that disease is not going to cure itself and share effects of the economic burden it puts on a family which can be devastating and detrimental without disability support

  • Get serious about advocacy and get involved in the Rare Disease Week coming up in February where there is free virtual registration, training and opportunities to share your story with Congress

  • Remember, you are not alone and shouldn’t carry the weight all on your own. Consider crowdsourcing your care! Sometimes fellow patients know more than doctors might about your diagnosis.

I struggle with the rare disorder called Ehlers Danlos Syndrome (EDS) type hypermobile. Learn more about disorders that people you love suffer from and consider advocating for them.

Be bold. Be brave. Be there for yourself. Be better. #healthcarein2022 #Zebrastrong


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