Illness and Identity

The topic for this blog post comes from my recent and ongoing experience with persistent pain that has been difficult to diagnose and treat.  In addition to living with this condition for almost four months, I have been reflecting on the parallels between my experience and that of many of our clients. 

My pain symptoms had a sudden onset, though I can see some subtle precursors for a few weeks before the onset.  This is often true for our clients, though some report symptoms that are more gradual in onset.  I have consulted with and received varying degrees of help from a number of health professionals including traditional and alternative practitioners, which our clients often do as well.   Ways in which I differ from many of our clients are that I have a high baseline of physical and psychological health, stable health insurance paid by my employer, and sufficient financial resources to pay for services not covered by my insurance.  Without these privileges, our clients face much greater challenges in managing their mental health symptoms, so I thought I would highlight some of the issues that come up with our clients who deal with persistent symptoms of depression, anxiety, PTSD, and other diagnoses.

One important issue related to living with persistent symptoms is one of identity.  This may take the form of resistance to a diagnosis (e.g., “I’m not a depressed person”), anger about the impact of the symptoms (e.g., “I want to be able to go to work without feeling panicked when I drive over the bridge”), and expressions of loss (e.g., “will I ever be able to get a good night’s sleep again?”).  We all develop a sense of who we are in the world and in relation to others, and this identity is disrupted when psychological symptoms make it hard or impossible to do the things that reflect our identity.  The client’s expressions of this disruption of identity may seem like obstacles to treatment, and we may find it difficult to empathize with the client’s distress.  However, acknowledgement of clients’ disruption and disorientation related to identity is likely to be necessary in order for them to engage productively in treatment. They may contact a rehab center for help with eating disorders or anxiety. The struggle about identity may continue for a long time, as is the case with a client of mine who has been in treatment for most of her adult life and has been receiving federal disability income for more than 25 years.  We still have conversations at times in which she says “I don’t want to have a mental illness.”  She sometimes expresses a belief that if she only tried harder she would no longer have the symptoms which are frequently debilitating.  I have come to understand this belief as an alternative to accepting an identity which seems intolerable.

A second issue that is likely to be prominent when working with clients whose symptoms interfere significantly with their daily lives is that of self-efficacy.  It is hard to maintain a strong sense of agency when symptoms feel unpredictable or uncontrollable.  It is also hard to balance self-efficacy as expressed by “what can I do to manage or improve my symptoms?” with self-blame as expressed by “what did I do to cause these symptoms or this illness?”  The first question can be helpful while the second is often unhelpful, but they are often confused in the minds of clients and sometimes for therapists as well.  When a client seems resistant to taking proactive steps to improve their condition, it may be useful to explore the question of self-blame or a perception of blame from others including you.  With the client I mentioned above who is very vulnerable to self-blame, I often say explicitly that her illness isn’t something she caused or can control directly while also reminding her of the things she can do and has done that contribute to a lessening of her symptoms.

The last issue that has become very apparent to me is the difficulty of our fragmented health care system.  Finding appropriate health care providers, making decisions about treatment recommendations, and coordinating care from multiple providers are all extremely complex tasks.  It is rare that a client has a provider who is able or willing to look at the whole picture of the client’s care, and for clients whose symptoms are moderate to severe it is rare that any single provider has the full range of expertise needed to treat their illness.  Some clients may have a family member who can assist in navigating the health care system, but this often carries other complications.  Other clients may be capable of this complex task when they are functioning at their best, but not when they are in a depressive episode or experiencing frequent panic attacks or other significant symptoms.  I would encourage all of us to coordinate our care as therapists with that of other providers when possible and to acknowledge, to ourselves and our clients, the inherent difficulty of assembling a treatment team to address all of the aspects of a particular set of mental health symptoms.  We can sometimes find ourselves feeling impatient or frustrated with a client who is struggling to find appropriate care or we may expect a client to comply with the limited options that are available based on their insurance and financial situation, without acknowledging the inadequacy of these options.

I hope my comments are helpful to you when working with clients whose disorders and symptoms require attention to issues of identity, self-efficacy and health care complexity.