Life at the intersection of health and mental health-Part 1

I am a consumer of mental health services who has been serving in leadership roles in nationally facing organizations for many years.  I currently work as the VP of consumer and family affairs for a large managed care company (not named here because my remarks are not a reflection of that organization’s thinking, policies or programs).  Many people in my family live with mental health issues.  My sister died by suicide. 

I struggled for years through the deep, bone-raking anguish of my mental health challenges, moving finally into a place of recover. Now, I face a recovery challenge of a different kind. This blog reflects my thoughts as a consumer of both mental health and physical health challenges as I once again move down the path of recovery in a new and different arena.

Early in 2013, I was diagnosed with not one, but two, different forms of cancer: breast cancer and uterine cancer.  Throughout this year, I’ve been able to do some thinking about how different  - and how similar – experiences in the worlds of mental and physical healthcare can be. Here are some initial thoughts.  

On diagnosis:  My recent cancer diagnoses came as complete surprises, based on the results of routine tests. (Let me tell you that, given my recent track record, I am NOT enthusiastic about going for my “routine” colonoscopy.)  Literally my first thought was, “Hmmm . . . looks like I am not going to beat the odds after all.”  By “odds,” I mean the odds, determined in a national study, that as an individual with a serious mental illness, I am statistically likely to die some 25 years earlier than individuals in the general population.

My second thought, hard on the heels of the first one, was , ”I never thought that I would die this way.” Of course, cancer is not a death sentence. And, neither is having a mental health condition. But the disability rates for those of us living with mental health issues are actually greater than those of people living with cancer.

I find it interesting that the cancer diagnosis seemed so much scarier to me. Is this because of stigma? Is this because cancer is an illness we are conditioned to take more seriously? 

Maybe, I’ve decided, it is because prior to my cancer diagnoses, I never felt that anything was wrong.  Long before I received a mental health diagnosis, I felt, maybe even knew, that something was wrong. So, when I received my mental health diagnosis, I felt some sense of relief. Finally, there was a name that I could place on the symptoms that I had been experiencing, a name that gave me a place to begin in seeking treatment, a name that would enable me to act and do something about it.

One other thought here:  I mentioned my upcoming colonoscopy and the fact that I’m not looking forward to it. But, our understanding of medicine and medical diagnosis is such that we accept routine tests – even tests that look for awful things like cancer – because we believe that knowing about these things early and starting treatment as soon as possible is the best thing that we can do.

Interestingly, I do not recall ever being asked about my mental health as a part of any routine medical office visit or screening program.  

Staff and surroundings: I remember thinking how much more comfortable the waiting rooms are for the six specialists I have seen as a part of my cancer treatment process so far. When I see my psychiatrist, the office is uncomfortable, crowded, and noisy. The receptionists are aloof and sit behind protective glass, and there are unfriendly messages everywhere about penalties for missing your appointment, losing your prescription, forgetting your refill, or asking for an emergency prescription. There is no patient education information available in the waiting room, either.

Contrast that with the friendly and sympathetic staff in all of my physical health specialists’ offices: the comfortable chairs, television, reading materials, restrooms, and water or coffee. Everything is about helping me to relax. One office where I waited for testing was like some weird spa, where women relaxed in gowns while watching TV and chatting with each other. In another I was offered personalized music to help with my anxiety. In another, the office manager and another patient went out of their way to talk to me when it looked like I was getting bad news. They shared their own personal experiences and offered me hopeful reassurances.

In stark contrast, no one waiting at my psychiatrist’s office even makes eye contact ; it seems “forbidden” somehow. Harried staff members run by without any interaction. I once actually had to confront the team in my psychiatrist’s office for making jokes about “canned nuts” in front of all of us. And, that was at one of those times when was literally hanging on to life by my fingernails. When I followed up and raised this issue with the psychiatrist, I could tell he was irritated with me. Why? Are those of us with mental health conditions so annoying that doctors and staff are completely compassion fatigued? Are we less worthy of a comfortable or calming waiting room?  Could it be a function of the huge caseloads our psychiatrists must take on because there are so few of them?  Or, is it once again an issue of the pervasive stigma associated with mental illness?

Educational information:  While none of the offices I visited offered a plethora of written, third party-created materials about the various illnesses being treated on site, in all my physical health doctor’s offices I was given materials documenting steps to follow and what to expect after leaving the office. After one appointment I was given a pocket folder and a nurse spent 45 minutes with me walking through the materials, showing me what prescriptions I had to get filled, what I needed to do to prepare for surgery and what I should expect post-surgery.

After a different appointment, I was told a nurse would be working with me as I recuperated from treatment – even helping me with choosing clothing that would not get in the way during my recovery. I never had anyone in my mental health care treatment provide me with any educational materials or information, help me prepare for a hospitalization, discuss what I might expect or watch for, or suggest coping strategies. Nothing.

Peer support:  While no one referred me to peer support in any of the mental health programs I’ve been part of, there was at least mention of those services and groups in the cancer world. Another interesting note:  the only time I ever dealt with a fellow patient who was disruptive, rude, or difficult was during one of my first visits to one of my cancer specialists. And in that case, the staff dealt with the issue by serving the difficult patient quickly and getting her out of the way so the rest of us weren’t forced to deal with her while we all patiently waited our turns.

Mental health consumers are always assumed to be more “difficult” and so, it seems to me, we face more strict rules in place to manage our “bad behavior.” Yet that assumption has simply not been borne out in my many years of using mental health services – the one time I witnessed “bad behavior” was not from a mental health consumer.

I mention this because when I was CEO of the Depression and Bipolar support alliance – a large national advocacy organization – we were told over and over again that clinicians were reluctant to refer mental health consumers to support groups because “it would make them worse”, or “those people are toxic.”  The assumption appeared to be that a group of mental health consumers would not only be “sick” and badly behaved, but unhelpful if not downright harmful. Research says the exact opposite, of course.  Participation in mental health support groups is linked to all kinds of positive outcomes – including increased adherence and decreased hospitalization.  Why is it our mental health clinicians often seem to think the worse of us?  Is it because they only see us when we are most ill, not when we are at our best?

I have found it fascinating to think about my experiences in both systems. What does this say about our health care system? What can we learn from physical health and take into the behavioral health world, and vice versa? In the meantime as I write this, I am preparing for my next surgery and the likelihood for chemotherapy and radiation therapy to follow. I am determined to stay positive and along the way I will be taking advantage of the vast amount of peer support available to someone going through cancer treatment.