More Than a Patient
“There is a lot of resiliency with these illnesses, I don’t know that people acknowledge how hard we have to work. We are fighting a battle!” Lizabeth Schuch
enBloom Media (EM): How did you become a patient advocate?
EM: What has been the greatest challenge for you in managing your own condition?
LS: In addition to bipolar, I have also been diagnosed with seasonal affective disorder (SAD). Earlier on, I had to manage mania and hypomania but it was not until ten years later when I had my first full-blown depression. This then opened me up to more depressions and then the seasonal component began to take shape each fall. Its been a long-time since I’ve experienced mania but with the shorter days during the fall and winter seasons, I can count on these depressive episodes and they are extremely debilitating. Because I’ve become very good at covering it up, it is difficult for people to understand what I’m going through. There is that overwhelming inability to get motivated, to focus, the loss of concentration and your confidence is shot, even though you are actually no different from before (the depression). It’s not as if you now know any less. It’s actually embarrassing to admit I feel this way because it makes me feel like I’m disappointing myself (and others). I am very hard on myself (and this is very common with people who experience these illnesses). It’s hard but I still manage. Other people really struggle with understanding the reality that while everybody get’s depressed, not everybody gets depression. As a result, it’s extremely difficult for them to comprehend that depression is an illness.
EM: What is the most difficult thing you deal with in communicating to others about your depression?
LS: I’d have to say people really struggle to comprehend that it’s not about being sad. It’s just not that simple. I try to help others realize that it’s not that something situational in my life has made me sad (like the result of experiencing a loss – that’s something we all can get depressed about), it is something chemical in my brain that causes the depression that makes my life so difficult.
EM: Do you believe the role of the patient is changing as the healthcare system reforms? How?
LS: Yes. When the Affordable Care Act is fully implemented in 2014, you can no longer be excluded from insurance for a pre-existing condition and mental health parity mean more coverage. Insurance coverage will make a huge difference for many. The patient’s role today is more front and center. We have to be so much more of an advocate for ourselves.
EM: Do you have any recommendations on how others can advocate for the best healthcare for themselves?
LS: Yes, patients must find a competent psychiatrist that they also connect with on a personal level—a physician that is willing to work with the patient as a teammate. After all, it is we the patients who must do the work, to get better, to maximize wellness and maintain our recovery. Patients must be honest. It’s easy as a patient not to want to disappoint your doctor but they won’t know what you don’t tell them. Before visits, be very thoughtful. Write out your questions and concerns about symptoms so that you have with a list of issues at your appointment. Finally, for many, therapy is also an important element. Years ago a doctor insisted, ‘What you have is biological, you don’t need therapy’ discounting the fact that managing a major chronic condition may create some issue for which I might need therapy to resolve. I also think this may have been before scientists understood the influence therapy had on brain chemistry.
LS: At the end of the day, I’m really just an everyday person but this is what I’m committed to do…dispel these myths. I’m here to bring more awareness…to be a voice for the many (who are not in a position to speak for themselves) and to help people understand just what bipolar and depression are really all about. I also want to point out that I’ve had more good days then bad in my life – I am filled with hope and I am blessed to have the life I do—in the midst of my illness.