We’ve been talking to 2015-2016 Team of Advisors about the Partnership Principles they put together and how they use them in their personal health journeys. Next up is Cyrena, who’s living with bipolar II and lupus and recently completed her PhD in pharmacology. Below, she talks about managing multiple conditions, getting on the same page as her doctors, and the need to be both empathetic and assertive in your relationships with your care teams. Plus, stay tuned for more from Cyrena soon!
What I’ve learned: Know your needs, make shared decisions
As a graduate student in pharmacology with an interest in mental illness and immunology, I usually find myself in a unique position in the “hot seat.” I don’t view my physicians as all-knowing entities. I am not a physician, but I have a knowledge base, both about disease processes and my own body. What I bring to the table is just as important as what they bring, and therefore I view my interactions as a partnership on mostly equal footing. (After all, I don’t have prescribing privileges!)
Studies at the PhD level require a level of stamina and mental acuity that aren’t always present in patients with lupus and bipolar disorder. When I am with my physicians, I have to express that my needs are likely different than the typical patient. I can’t have medications that dull my thinking or alertness. I have to keep things moving along, so even if I have a flare I may be able to slow down but I can’t completely stop and rest. Once we are on the same page regarding my needs and expectations, we are in a position to make shared decisions that work best for my health and my studies.
Having both a mental and immune illness has been an eye-opening experience. Because psychiatry and mental health is essentially isolated from other areas of medicine, I have had to be the foreman in the factory, making sure that all the parts go together and everything works as it should. I have been diagnosed with bipolar disorder longer than lupus, but in almost every encounter outside the psychiatric setting, it is basically an afterthought. I have to assert its importance in my health and wellbeing and try to bridge the silos. Part of my research involved the effects of the immune system on mental health, so I am intimately aware of the relationship between the two in my case as well as in the scientific literature. Fortunately, I have a psychiatrist who is well versed in the relationship between mental illness and physical chronic illness, so I am not completely alone in my struggle.
“Clinical folks are people, too. I am an empathetic and assertive patient, and I am sure that has eased my relationships with clinicians throughout my illness experience.”
For those who shoulder multiple illnesses and significant career expectations, it is critical for the patient-clinician partnership be clear on how treatment will impact those expectations, and that what is “most important” can change at any point. At the same time, recognition of the new or ongoing limitations of illness and perhaps being willing to reevaluate the history of illness and treatment plan, even if it may result in career setbacks.
Partnering four ways: Advice from one patient to another
First and foremost, know who you are and what you want. The clinical environment can be intimidating, and when you’re sitting in the patient’s seat, your mind can completely blank out and you find yourself going along with whatever they tell you to do.
Secondly, know who they are and what they want. Clinicians have goals as well, and if you are managing multiple conditions, those goals may be in conflict with one another. Be prepared to advocate for yourself in the event of pushback, but also acknowledge and appreciate when their goals align with yours.
Third, stick up for yourself. If you don’t like something, whether it’s a treatment plan or the clinician themselves, be willing to say “no.” I have no problem walking away from a clinical environment that does not suit my needs or will not work with me. I recognize that others may be limited in their choices by geography or insurance plans, but voting with your feet can send a message that comments or complaints may not.
Fourth, recognize the limitations of your clinicians and the medical system. Your appointments aren’t 15 minutes because that’s what the physician wants. They hate it too! There are forces outside the patient-physician relationship that are invisible to the patient but omnipresent in the office visit. My mother is a nurse, my research advisor was an MD, and I spent a little time in medical school. I am aware of the pressures on the other side and try to give most clinicians the benefit of the doubt. A little empathy goes a long way. It may not seem like it, but clinical folks are people, too. I am an empathetic and assertive patient, and I am sure that has eased my relationships with clinicians throughout my illness experience.
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