The Struggle is Real
It was just after the Run Through Redlands in the spring of 2013, roughly my third half marathon and my first attempt at this particularly challenging course, that I realized I had been coughing for months and that the breathlessness I was experiencing and the resulting post-race exhaustion indicated something I would likely need antibiotics to clear-up. But then the pulmonologist found something on my chest x-ray. Something, the doctor said, he anticipated would be resolved upon review of a second x-ray. We reviewed it together before he sent me home that day. But, it was still there. Initially termed a “coin lesion” by the radiologist, the doctors, over the next year, began the extensive assessment algorithm for a “single pulmonary nodule”. With each minimally invasive step we passed through I became more and more concerned, despite the sighs of relief among the few whom I kept regularly updated. Even though we were ruling out the more common and obvious diseases, the procedures for diagnosis were becoming more invasive and as I understood it, leading to more and more menacing possibilities.
When my pulmonologist grew concerned due to the development of additional nodules but still had not reached a diagnosis, he made a referral to the Women’s Oncology Center at Loma Linda University Hospital for further evaluation. There was not much factual information at this point to be concerned about. No one had told me I had cancer but it loomed over my head like Edger Allen Poe’s, “Black Cat” ready to devour my last breath. I didn’t respond the way I imagined I might. Despite what those around me at the time saw, I completely fell apart. My head hurt. My joints were stiff. My muscles ached. I pushed myself to run, cycle and swim whenever possible, telling myself that since we didn’t know what it was, it was probably nothing.
I feared that my head was playing tricks on me, making me believe I was sick and didn’t feel good because I was afraid of being sick and not feeling good, when in fact everything was fine. “Am I depressed because I’m sick or am I sick because I am depressed,” I journaled in the Spring of 2013. Despite how I felt, I worked hard in the final months prior to my tenure review at the University of Redlands. But during the quiet hours after my boys were dropped off at school in the morning and my husband Matt at work, I carefully reviewed doctor notes and obsessed over test and imaging results. I researched terms like “ground glass opacity” and “speculated margins” and studied the correlations between malignancy and tumor diameter. And, I wept.
The testing continued and as we neared the end of the diagnostic algorithm, including two bronchoscopies and a lung biopsy, I could tell that my emotional withdraw was taking its toll on my family. It took me months to find the time and energy to call the insurance company to figure out what I would need to do to receive counseling. When I called Aetna, they explained that I did not have mental health coverage. My human resources office explained that I had a different carrier for mental health. Several weeks passed before I found time to explore the long list of certified professionals covered by my mental health insurance and seek the appropriate approval. After carefully selecting someone that I thought would be a good fit, I felt discouraged to learn that the co-pay was more than I could reasonably pay on a weekly basis. And I knew I would need to attend weekly to move through this experience successfully. Matt suggested that I use my Employee Assistance Program (EAP) benefit which allows for 8 free sessions. Several more weeks went by before I called the EAP number and reviewed another list of counselors in the area before making an initial appointment.
I was relieved the day I walked into the counselor’s office. I knew I wouldn’t have to feel so alone, that I would get support, be reminded of the strength I had inside of me to manage even the most challenging of life circumstances and learn new skills for managing the intense and unexpected emotions. The session was scattered. I had a lot to talk about and I didn’t know how or where to start. Everything seemed so overwhelming, there was so much to explain; important things I needed to get to right away that would only make sense if I started from the beginning. It tumbled out almost nonsensically to the rhythm of choked sobs. I had explained who I was…wouldn’t that be important in any counseling relationship? Perhaps I was a bit straightforward since I felt pressure to get the important issues covered. I explained that I am a counselor educator at the University of Redlands and that I am a Licensed Marriage and Family Therapist and Licensed Professional Clinical Counselor along with a brief list of my current academic responsibilities, when his assessment required that he ask questions about what I do for a living. I thought I could see him shift in his seat and his rate of breathing increase. As a counselor I understand the physiological response that comes with feeling like you are under pressure to do strong work. I had hoped he could manage his reaction while providing for me that which most other clients require, a safe contained environment, a holder of the intensity and emotion.
The two sessions I attended are a blur. I couldn’t tell you whether a specific incident or conversation occurred during the first appointment or the second. But here are a few of the highlights. I could immediately see his need for me to know who he was; who he knew professionally and how. “I used to teach at Loma Linda in the Marriage and Family Therapy program”. As he described the women whom he co-taught with I vaguely remembered being in their class. Perhaps he wanted me to remember him. He talked at length about the courses he taught and his clinical experience. Perhaps he wanted me to feel confident in his abilities. He described his break-up with said co-instructor and the night he “drunk dialed” her. He directly challenged the fear, loneliness, sadness and emotional withdraw surrounding my health status by discussing his client who was reportedly dying of breast cancer and how strong she and her family were being. Was I whining too much? Was I just weak? Catastrophizing?
Probably most disturbing was when he simultaneously explained that he needed a tissue as he lunged from his chair across the room to where I was sitting to grab one from the box beside me. It played out in slow motion. It was awkward and uncomfortable. “Sorry,” he said as he sat back down, “I’ve learned to warn women when I’m going to do that because I’ve had some freak out on me.” He then went on to describe in detail the complaint made by a previous female client that sent him to court fighting for his license and the stress that had caused him. There were 15 or 20 minutes left in our second session. Psychologically and emotionally, I had completely closed down. I stared at him but could hear nothing he was saying. I fought the powerful urge to stand up and walk out. My heart raced and I wanted to escape and despite all the warning signs, I remained seated…and respectful in a near child-like state until the session had officially ended. I knew long before I walked out the door that I would never come back.
Immediately following this appointment I met Matt in my office for lunch. I was as depressed, tired and withdrawn as ever. The story eventually came out, slowly building to a tearful crescendo and concluding in the all-important question, “am I just being resistant”? This is a word I advocate against my counseling students using to describe their clients, preferring the word reactance instead; insinuating that guarded responses are purposeful and should be honored and respected as opposed to labeled and pathologized. Was he trying to bring up important issues because there was something there for me to learn or discover? Perhaps I needed to sit with the awkward discomfort because it was a reflection of my own issues? Frankly, challenging myself around these questions was the only motivation I had for returning a second time. It wasn’t until I saw and heard Matt’s reaction that I could see more clearly, how inappropriate the counselor had been. I immediately wondered what this experience would mean for women less assertive than me, for those not trained in the art and science of counseling or who speak a language other than English as their primary form of communication? Despite being at a new low, worse than before I had initiated counseling and attended a couple sessions, it was nearly a year and a half before I could muster the courage and then gain the emotional momentum to seek counseling services again.
This time was very different. A friend, also a counselor, suggested I not tell the women I had an appointment with what I do for a living but I couldn’t imagine doing that since my professional training and career in academia is at the very core of who I am as a person and what drives and motivates me. In addition, the point of the EAP benefit is to look at symptoms through the lens of employment. I figured I could make a case for how my health issues were impacting my work. I was also preparing to begin my first sabbatical which frankly, freaked me out a little bit. I shared with my new counselor details about my current job and training and explained too about my delay in seeking services after the negative experience I’d had prior. I explained that I didn’t feel I needed anything different than the rest of her clients, a contained safe environment to feel and express my feelings and gain insights and self-awareness about who I was as a wife, mother, teacher, colleague and clinician. She immediately created a safe environment where she respected my training and knowledge without compromising professional boundaries. I found our work together to be extremely helpful. In fact, at the end of eight sessions, she thought I may have enough going on that I could request additional sessions from EAP.
After 16 sessions we had covered a lot of ground and now, in addition, I began processing the near loss of my mother and her ongoing challenging recovery. I wasn’t done with the work we were doing, we both knew that. She suggested that I contact my insurance company to see about a one-time contract that would cover her as a provider. She said that in a few situations they had done that. She explained that she had wanted to be a mental health provider for Aetna for years but was regularly denied reporting that they had sufficient providers. Given her high private pay fee, I figured it was worth a try.
Again, and despite feeling much better, there was a delay in my finding the time, energy and motivation just to make the calls, ask the right questions and act as a self-advocate. The first number I called reached someone unable to help and they transferred me somewhere else. I left a message with the next contact person who contacted me back within a day or so stating there was a third number I would need to call. That person took fairly extensive information and given what I had to say, requested to put me on hold to see if she could expedite my request. When she returned she apologized that there was nothing she could do and that I would need to go through the regular process. Several weeks later I received a letter that my request had been denied. Instead, I was given referrals to therapists in Moreno Valley, Rialto and Riverside (surrounding cities outside my hometown where my counselor is located) along with information about the appeal process.
Most concerning about this series of events is the fact that I am intimately familiar with the processes of insurance authorization, clinical criteria and well, my personal mental health and family history. Intrusive thoughts are just that, they are intrusive. They are there; sometimes seemingly out of nowhere despite not wanting them, precisely as if you have no say. I explained that I had been having these types of disturbing thoughts. I fought the shame that came up even as I said it. I had shared details about my own professional training and challenge in finding a well-qualified provider whom I didn’t know in some capacity. Unfortunately, I think a lot of people believe that counselors are exempt from needing mental health support. Sometimes, even the counselors themselves. I described using eight EAP sessions and having it renewed for another eight believing this would bring credibility to my self-reported struggle and validity to my sense of knowing what I need. I discussed openly the 1.5 year delay in care after my encounter with a terribly unsafe and unethical provider and having felt so relieved to build a healing relationship over 16 sessions with a provider with whom I felt connected.
The thought of starting over or even navigating the appeal process is overwhelming. It feels at a minimum disrespectful and oddly abusive; at worst, perhaps a violation of the Mental Health Parity Act. So the time passes and when I think about it (even when it is intrusive and I don’t want to) and recognize the potential benefits of counseling in my life, I wonder about what I should do next and what steps I should take and the ambiguity sends me in a circle leaving me where I started; questioning who I should find, what training, specialty, gender, location none of which ensures a skillset that would be a good fit for me as a person, a clinician, professor, mother, survivor. Lack of clarity, confusion and indecisiveness gives way to another week of meeting student’s needs, class prep, faculty meetings, clinic supervision, parenting, laundry, piano, soccer and karate lessons, baths, homework and bedtime before a brief couple of minutes to spend with my partner to relax while trying to hold the to do list for the next several days at bay.
I am choosing to tell this story as we head into May, which is Mental Health Awareness Month, because it represents within it, multiple obstacles and barriers, both to seeking and accessing services. Some are structural, some practical and others perceived. And so, I wonder how the details of this story would shift or change if English was my second language, if my cognitive functioning was severely impaired, if I wasn’t able to manage basic tasks of daily living, if I didn’t have health insurance or transportation, if I weren’t trained as a mental health professional, a counselor educator and community mental health advocate. This is why communities disengage from the topic of mental health, families suffer and individuals stop functioning and even die.
For many, the counseling relationship literally is their lifeline. A relationship, when done right, that should be honored, respected and deeply appreciated. That is how I feel about my relationship with Tracey Covington. I hope it is one I will be able to continue engaging in over the years as life happens and challenges arise. I haven’t heard many counselors talk about their own experiences with seeking and accessing counseling services. Personally, it is not information I’ve typically freely volunteered nor do I particularly want to. However, it seems to me a potentially powerful way to draw attention to the inequities and discrimination deeply imbedded within our medical insurance system designed in stark contrast to actively discourage access and utilization by our most vulnerable. Transformation in the form of healing or improved functioning is a process, and as life happens there are tons of ups and downs. It’s a journey of discovery – there are moments on mountaintops and moments in deep valleys of despair. Access to professional assistance during these darkest of times is a basic human right that prevents suffering and death.
In the end, I was diagnosed with “probable aspergillus”. Statistically I was more likely to have cancer, but there it is and I am grateful none-the-less. Nearly a year on an antifungal medication has given way to periodic chest imaging to insure that nothing in the lung is changing. Still, I’ve been assured by my infectious disease doctor at Loma Linda University Hospital that, at any sign of returning symptoms I am free to contact him to arrange for additional assessment. Parity means that I should have equivalent care and coverage for my mental health as I do for my physical health. Anything less is DISCRIMINATION and is ILLEGAL.
2 thoughts on “The Struggle is Real”
Thank you for your courage to be vulnerable in order to shed light on this important issue. And for standing up for all those folks who will never see a mental health professional, let alone stand up for themselves to the insurance companies. While more folks are covered today, access will continue to be a problem as long as insurance companies run the show. Insurance companies do not value our clients or our dedication to education, training and experience. I have never read a better explanation of our current problem of access to mental health. Well done.
Powerful experience. We have much to learn listening to the stories of others. Thank you for sharing.