Never Not Sleepy - Narcolepsy w/ Cataplexy
My (unfounded and likely inaccurate) guess is that at least half of this blog’s readers and the podcasts listeners do not live with an illness, condition, or disorder. Perhaps you were drawn to the content because of a loved one’s experience. Maybe you work in healthcare and crave a deeper look into the patient/client perspective. Or perhaps you were drawn in my your innate human curiosity; the exhilarating possibility of catching a glimpse into a facet of the human experience with which you don’t directly relate.
However you non-sick boys and non-sick girls found yourselves here, I commend you: for opening yourselves up to the sometimes difficult, uncomfortable, and gruesome details, for accepting the challenge of confronting personal biases, and for embarking on the commendable journey towards enhanced awareness, enriched knowledge and understanding, and ultimately, personal growth.
So my contribution on this platform is for you; to help further that learning and extend that journey. Based on my experience of living with Narcolepsy, I offer you a few nuggets of wisdom to help guide you in supporting the people in your life, or the people you will encounter, who are living with illness. Consider this a crash course in support ‘networking’…
Be curious and ask questions.
Having an illness often precipitates feelings of reduced autonomy and a loss of control. Yet while the realities of being ‘sick’ can impact one’s ability to take charge of their health, self-advocacy and self-education provide opportunities to regain some of that control; becoming an expert in our illness gives us the power to take an active role in our care, understand our prognosis, and educate others.
By being curious and asking questions, you not only seize an opportunity for greater learning, but you provide that person with the time and space they need to share their expertise and in doing so, exert their power over their situation.
Consider each individual’s experience within its own context.
Unlike Olympic victories, illness does not belong on a comparative scale. I often hear the experiences of one person being compared to those of another: “Well her cancer is only stage 2. My aunt has stage 4 cancer, so it’s a lot worse” or, “You think depression is hard? Try having bipolar affective disorder.” Yet, whether we’re talking about within or across illness groups, these judgments of similarity and contrast are rarely productive, and are often harmful.
It is inevitable that the ‘sick’ person in your life will be subjected to this kind of associative discourse at some point. However, as part of their network of support, it is important that they not hear it from you; it will only leave them with the impression that you are not understanding of their experience and make them less likely to come to you for support. Instead, recognize that his or her experience is entirely unique to that of anyone else and that they deserve to be treated as an individual, without the injection pre-conceived notions or opinions.
Respect limitations and accept the “no’s”.
Living with an illness, or in the wake of one, often poses obstacles to fully engaging in the activities of daily living. These obstacles come in all varieties: physical disabilities, mental health concerns, chronic fatigue, etc. It can be a substantial challenge for someone who is ‘sick’ to come to terms with the barriers they face; to learn the importance of setting limitations and saying “no”.
In order to support them in this process of acceptance and learning, strive to acknowledge and accept those limitations they’ve set for themselves. Try to understand what they are and why they are important, so that you can be in a judgment-free position when they exert those limits. Accept that person’s choice to turn down certain opportunities or experiences and try to remember how difficult it (probably) was for them to develop that level of self-advocacy.
Recognize loss in its various forms and learn to grieve supportively.
Loss has many faces. Reliance on caregivers can mean a loss of independence. Dependence on medications can lead to a loss of autonomy. Unknown prognosis can trigger a loss of stability. Diagnosis of a degenerative disease can generate loss of control. Altered physical ability can elicit a loss of identity.
It is almost inevitable that a person living with an illness will experience loss in one or more of its many forms throughout their experience, and while there is great variability in how people cope, the support of loved ones is universally important. By grieving their loss with them and validating the legitimacy of its impact, you give them permission to experience their emotions fully and begin to heal.
While these nuggets of wisdom have the potential to guide you and boost your supportive impact, I want to acknowledge the power of good intentions. You won’t always ‘get it right’, but - as cliché as it sounds - it truly is the thought that counts. Just by showing interest in a person’s experience, you are being supportive. Simply being present and open earns you a place in their network.
It is not my intention to censor your actions or make you hyperaware of your words. The idea is not to beat yourself up for being imperfect; quite the opposite actually. It is my hope that these ideas will provide you with a platform for self-reflection; a context within which you can explore those imperfections and use them as the catalyst for personal growth.
So, on behalf of the sickboys and sickgirls whose lives you will impact - and those you have inevitably impacted already – thank-you. Your support is more meaningful and potent than you know, and is a fundamental aspect of the healing process.
Written By: Hilary Mair