My hope for this book is that fellow sufferers of invisible chronic disease will find validation in their struggles, that they can share it with friends and families to help communicate what it’s like living with these diseases and that medical professionals will begin to understand what their patients are dealing with and develop the communication skills and empathy that patients are in desperate need of.
A 2014 American Autoimmune Related Diseases Association (AARDA) survey revealed that it takes four years and five different physicians for a patient to receive an accurate diagnosis. As in Kelly’s case, many patients are labeled chronic complainers and their concerns dismissed. If concerns are not dismissed, patients can be prescribed a variety of medications. Many times, without an exact diagnosis, these medications can potentially exacerbate a patient’s condition.
Not only are bodies being drained physically but so are finances. AARDA has heard Kelly’s concerns. In an effort to alleviate patient suffering, AARDA distributed a physician survey to gauge how much autoimmune disease education they received in medical school. The results are alarming. The survey showed that 13% of the respondents didn’t receive any autoimmune disease education at all while only 22% received five or more lectures. Sadly, 32% believed that they didn’t receive enough training to diagnose or treat autoimmune disease and half of those that responded were uncomfortable with diagnosing autoimmune disease.
These results are why Kelly’s story is so timely and needed. Her chronicles are relatable and speak to the need of increased autoimmune disease education. Hopefully, readers will not overlook Kelly’s bravery and only see only the challenges that she has endured. We hope that patients find strength to speak up and speak out about autoimmune disease. Writing letters to their Congressperson, participating in awareness walks and taking their stories to the local media are only a few ways to take action. Awareness and education depends on us…the 50 million with autoimmune disease.