Claire Richmond can be considered a very experienced patient. It took Claire nineteen years to receive a diagnosis for her rare disease. During that time, she had been dismissed by doctors so often that she began to doubt her symptoms. Yet most episodes were so painful that she was quickly brought back to reality.
According to her article in the Porphyria News, the term medical gaslighting refers to situations where doctors disregard or minimize dangerous or disabling symptoms by either refusing to order lab tests or attempting to associate a patient’s symptoms with mental disorders.
Claire is very familiar with gaslighting. For years she had been looking for answers to her severe abdominal attacks. But by her thirty-second birthday, her colon completely shut down. This time the ER doctors took her seriously and she was hospitalized. Claire has since found doctors who diagnosed her condition as acute hepatic porphyria.
Seeking a Primary Care Physician (PCP)
Claire’s disorder involves multiple specialties such as cardiology, pain specialists, neurologist, allergist, therapist, and gastroenterology. Her hematologist coordinated referrals for all other symptoms that he did not treat but it was not working. Claire decided that a PCP would be more likely to manage referrals.
She refers to her past history with doctors as toxic because many doctor visits left her terrified, exhausted, and traumatized.
Now her goal was to work with this doctor who would coordinate the various aspects of her disease, study her disease and be her advocate. Would it work? Would she believe her or would she have to prove herself?
Surprisingly, her appointment went well. Perhaps it was successful because she has learned how to ask for help. Claire is the first to acknowledge that having a rare disease is a full-time job. It means managing referrals, specialists, holistic care, and appointments. Magically her new PCP has eased many of these burdens.
The key according to Donna is that her PCP is not heavily involved in her porphyria. This gives her the opportunity to see the big picture and attend to symptoms that are not porphyria-related. Still, Claire does not lose sight of the fact that in the final analysis, it is her responsibility to see that everyone on her wellness tree is actively involved.
People with a rare disease know that these specialists are not all conveniently grouped in the same cities or even the same states. Therefore, Claire keeps her PCP updated by sending records of her labs, hospitalizations, or any other news from her hematologist.
A Constructive Use for the Family Tree
Claire introduced herself to her new PCP by showing her a chart she designed that lists all the doctors she was currently seeing and all the doctors she should see in the near future. The chart was developed after Claire consulted with other patients and reviewing medical studies.
The bottom row of the chart lists wellness professionals such as massage therapists, physical therapists, chiropractors, and life coaches. An interactive version of her chart is available online.
