The word has never sat well with me. Telling someone they have “a chronic illness” seems to do little but relay a sense of hopelessness.
Language changes over time. Moron, idiot and imbecile were used as diagnostic and legal terms centuries ago but certainly would never be used as such now. Chronic, while not as overtly insulting, seems to suck hope out of a conversation. Long-lasting, longer-term, those seem better ways of conveying the concept. Am I being politically correct? Maybe, but I’m okay with that.
Patricia Deegan’s Recovery: The Lived Experience of Rehabilitation (click to view) was published nearly 30 years ago. It is a timeless, important read and every professional who works with persons with severe and persistent mental illness should know it. ACT teams should read it together at an education session at least every couple of years, not as a mantra (though I would not object) but to truly discuss what she presents.
“It is important to understand that persons with a disability do not “get rehabilitated” in the sense that cars “get tuned up” or televisions “get repaired.” Disabled persons are not passive recipients of rehabilitation services. Rather, they experience themselves as recovering a new sense of self and of purpose within and beyond the limits of the disability. This distinction between rehabilitation and recovery is important. Rehabilitation refers to the services and technologies that are made available to disabled persons so that they might learn to adapt to their world. Recovery refers to the lived or real life experience of persons as they accept and overcome the challenge of a disability.”
“All of us who have experienced catastrophic illness and disability know this experience of anguish and despair. It is living in darkness without hope, without a past or future. It is self-pity. It is hatred of everything that is good and life giving. It is rage turned inward. It is a wound with no mouth, a wound that is so deep that no cry can emanate from it. Anguish is a death from which there appears to be no resurrection. It is inertia which paralyses the will to do and to accomplish because there is no hope.”
“It is important to understand that for most of us recovery is not a sudden conversion experience. Hope does not come to us as a sudden bolt of lightning that jolts us into a whole new way of being. Hope is the turning point that must quickly be followed by the willingness to act.”
ACT and mental health clinicians don’t rehabilitate people, they help create opportunities for change. Getting clients into situations that may lead to better housing, that may lead to an educational opportunity, that provides a chance to feel heard and empowered, that is the goal. Such opportunities may never come up without the clinicians’ persistence and hard work. Creating such opportunities does not necessarily create change but it can sure help!
In the 4000 words of Pat Deegan’s essay the word ‘chronic’ does not appear once.
If you haven’t read this please, please, please take the time to read it in its entirety. If you’ve already read it, make time to read it again.