As an adult with a disability, it is easy to feel powerless in the face of what may be potentially more comprehensive medical treatments required for even the most seemly benign medical issues. When I go to the doctor’s office, I end up getting more tests and more follow up for even routine treatments, simply so my provider can “make sure” and “double make sure.” I know this is a reality, because I am physiologically diverse compared to a majority of case examples a typical doctor will treat in his or her lifetime of practice. Over time, I have come up with a few requirements of my own as a professional who is limited in the amount of time I am available to chase down all of these extra tests and follow ups.
First, I do not live afraid to say no to a medical provider. If I do not like how I am treated or how treatment practices are handled unique to my situation, then I must let go of my pride, cope with a little bit of anger or shame, and research alternative providers. Ideally, a provider should be an individual who will make time to have a conversation with me, acknowledging me as more knowledgeable about my own body (since I am the one who has lived with it for 30 years). In addition, I keep hard copies of all tests completed so that I can avoid multiple lab tests for various reasons if the one completed recently might suffice. Be willing and able to say no to providers you do not want or tests/follow ups you do not need.
Second, take a look at the overall treatment of all patients at a given medical practice. My preference is to have a primary care provider, but also have a walk-in care option available. If I already used up my paid work sick leave for a prior medical issue, I may need to be able to see a doctor or physician’s assistant on a Saturday or Sunday in the hopes of preventing further absences from work. My work requires scheduling with others several weeks ahead of time and canceling meetings too often may have an adverse affect on how colleagues and supervisors view me as part of the workplace team. Thus, I am very conscious about when I am missing work and how often. Make sure your medical providers are available outside of your own working hours so that you are not missing too much work and are not needing to use emergency rooms for minor medical issues walk in care options might be capable of handling.