Why Chronic Illness Complicates My Answer When I'm Asked, 'What Do You Need?'

One of this month’s Mighty writing prompts focuses on the question, “What do I need?”

This seems to be a simple enough question, but possibly with a complex, multi-layered answer.

One way in which we have come to know about human needs is through “Maslow’s Hierarchy of Needs,” usually neatly depicted as layers of a pyramid. As fundamental human needs go, we pretty much all share those same needs – albeit it different in relevance and proportions depending on a variety of individual circumstances.

In addition, it is helpful to know that a crisis in life often results from personal needs that have been ignored, suppressed, neglected or even denied for a long period of time. Although it may appear to be a sudden event, a crisis has usually developed over time. Repeated warning signs, discomforts, and conflicts may have been ignored or denied for a while, so that the imbalance intensifies until there no longer is merely an imbalance, but an emergency. Especially long-term emotional and psychological deprivation associated with ignored needs is likely in time to emerge as a crisis.

But when there is chronic illness, pain, disability or a mental struggle, the entire correlation between the personal needs changes, not to mention an entire new category of needs that gets added. And as unfamiliar and unprepared we are for the fundamental impact of a chronic condition, so unfamiliar and unprepared are we with the content of those changed and new needs. For there is a big difference between the familiar and acceptable needs which are necessary for everyone’s general well-being and personal realization, and the needs which result from severe loss of independence, sense of purpose and an uncertain future. An entire new reality has to be learned and coped with, including the new needs that have now entered our life, without introduction. This takes a lot of effort and time.

And even once those needs have been recognized, they are not easily expressed. As we know, a chronic condition and its associated affects, symptoms, and disabilities can be accompanied by feelings of shame, inferiority and guilt.

By now, most of us know about the stages that compile the process of loss and grief: denial, anger, bargaining,
depression and acceptance. This model, as any model, is debatable, but for this reflection it may serve us sufficiently.

In expressing my needs and by asking for help I, in effect, admit to my condition, which is at least a tentative, albeit reluctant form of acceptance. But acceptance is really something I try to avoid and getting there involves deep psychological and emotional conflict. This is the reason why expressing my needs is so difficult. After all, by being in denial of my needs by not expressing them, I can be, in a roundabout way in denial of my condition. But as we have seen, a persistent denial of needs will in time result in some sort of a crisis.

Next, apart from the obvious practical needs, such as assistance with tasks of personal hygiene and domestic chores,  we also face the added need, or rather the necessity, of re-creating our sense of self, our idea of our place in the world and the need for recurrent re-evaluation of our motivation for and meaning of life.

In terms of Maslow’s hierarchy, we could call this the “Need for Self-Actualization.” But if for a fully functioning and healthy person the striving for self-actualization is a matter of singular focus into their future, the entry of a chronic illness or disability requires that we first have to come to terms with our limitations and feelings of inferiority before we can even believe that self-actualization is possible. And yes, self-actualization in terms of say, a full-on vocation, building a family, engaging in education and training, travel and other worldly endeavors can be limited.

But maybe worldly endeavors are anyway a distraction from how our true self can be actualized. Maybe here, for us, the possibility for self-actualization is most present when it appears to be most missing. Is it possible that the opportunity for personal growth and fulfillment – actualizing our self – is defined not by our limitations, but because of them?

Here we encounter, as was said, a complex and multi-layered answer. And I find the search for that answer most worthwhile, for I cannot believe, much less accept that simply by our experience of being ill and disabled are we excluded from actualizing and expressing our highest potential. We now have the life we are given. For the most part, we cannot control what happens to us. We get injured. We fall sick. We grow old. This cannot be denied. But we do have control over what we do with this life and how we live with our fate and in that manner meet our need for self-actualization.