Of all the patient information pamphlets I’ve encountered about kidney failure, kidney dialysis, and kidney transplants, none have ever addressed what to do about your soul, and about coming to terms with what this means for you.
I’ve been in this world for 22 years, after losing my kidney function in my late 20s. I spent seven years on dialysis (in-centre and self-care nocturnal) and had a kidney transplant (with complications). I want to share with you what I’ve learned about living through that.
I’ll leave aside the medical details of dialysis and transplantation for this post. There’s plenty of information available about that elsewhere. Instead, I want to briefly talk about fear, uncertainty, suffering, pain, hospital culture, courage, and other people.
In the beginning, you don’t know what you don’t know about this. Frightening concepts are thrown at you, like the possibility of an organ transplant. You owe no one any apologies for feeling afraid, including yourself. Your limbic system will prompt you towards a fight, flight or freeze response around any or all of this, because it’s supposed to. Those lower regions of your brain perceive an attack that is potentially life-threatening, and that’s a natural response.
Responding to this compassionately can include learning to calm your hyper-alert body, using methods you already know, or learning new ones. A kidney failure diagnosis can be quite simply traumatizing. You can’t run from it, and you can’t really fight it. The resulting sense of being trapped creates the trauma. Somatic interventions, either from yourself or others, can help with processing trauma and re-regulating your body.
That gives you ground on which to get your bearings: learning what you can, when you can, about your situation. Much fear comes from not knowing, so knowing can bring some measure of relief, and the ability to prepare. This is best done when you have found ways to calm those parts of yourself who are distressed. Knowledge helps, but not from within a context of dread. Learning about dialysis and transplantation, when you are ready, helps to avoid focusing on the potential pitfalls, instead of focusing on all the ways to avoid the pitfalls.
Fear goes together with uncertainty. We seek certainty by habit, so the sense of uncertainty with a major medical diagnosis is as overwhelming as the fear. Everything is on the table. What becomes of your career, your life plans, and your connections? What will life look like now? All types of dialysis, for example, can completely restructure daily and weekly routines. As dialysis is the primary life-preserving activity, almost everything else takes a back seat.
This can challenge you at your core: if this is my life now, then who am I? The question may not have come to you quite like that, but our sense of identity is formed mostly from memories, experiences, and expectations. We build our sense of self around career, family, and the quest for our personal concept of happiness. Kidney failure, and everything that follows, threatens that, so it threatens identity.
Coping with uncertainty means becoming comfortable with uncertainty. Becoming comfortable with uncertainty counteracts the sense of doom. If we make our happiness and sense of security conditional on everything going our way, or reaching all our goals, then we make our life that much more difficult for ourselves. This is especially the case here.
Becoming comfortable with uncertainty is a new skill for almost all of us. It requires resisting our mind’s drive to seek certainty at the cost of our mental health. Leaning into uncertainty is about being well, against despair, and finding the root of happiness. It’s very counterintuitive that uncertainty is the root of happiness. And it’s the response you won’t hear from most people. But it’s the response I’ve taken to heart from listening to some very wise teachers: nothing to hold onto is the root of happiness.
Nothing to hold onto doesn’t mean letting go of those you love, and who love you. It doesn’t mean letting go of the small things that give you comfort. But it does mean recognizing what convictions you’re attached to: convictions, or rules, about what is required for security and happiness, and how you think you should get there. It means recognizing the sticky points where you make your sense of security and happiness conditional.
And then it means stepping back from those convictions. Stepping back from your rules that state, “if I cannot do x,” or “if I cannot have y,” then “I will never be able to experience (or deserve) joy, happiness, or security.” That’s because when you remain attached to those convictions and rules, then the suffering arising from your kidney failure is made so much worse by the anguish of not being able to obey your own rules for happiness.
Suffering and pain
The late Vietnamese Zen Buddhist master, Thích Nhất Hạnh, has spoken profoundly about suffering. He taught that suffering and happiness co-exist. They do not deny the other. One cannot have a life where there is only happiness and no suffering, nor the reverse. Given this reality, he writes, “the art of happiness is the art of suffering well.”*
The goal in coping with pain and suffering in kidney failure is to learn how to suffer well, so that you do not extinguish your access to happiness. This doesn’t mean conceding defeat to your situation, admitting it as “okay” or “fair” or a “deserved fate,” or any such story. It doesn’t mean denying to yourself, or to others, the raw truth about just how much you don’t want this.
It means letting go of the mind’s exhausting struggle with what Is so that you can redirect that energy towards making space for living well. It means recognizing how unchangeable the diagnosis is and accepting that unchangeability.
This is not a command performance. This happens on your own time, and in your own way. One of the first forms of suffering we encounter with a diagnosis of kidney failure is grief. When you are honest with yourself about how much you don’t want this, while accepting its reality, the floodgates open to the sense of loss. I can never go back to how it was. Many things will stay the same, but other things are lost in this process. You want to be able to mourn what you’ve lost and give your grief the attention it deserves.
There is also physical pain. We all experience and tolerate pain differently. Again, you do not owe anyone an apology for what you find painful. Pain has always had the primal function of getting us to react quickly to something that may be harming us. It’s counterintuitive to your reflexes to simply allow something painful to happen.
Responding to this means becoming familiar with, and expanding your window of tolerance for, the routine sources of pain in your medical experience, and then minimizing your anticipation of that. Anxiety and anticipation can magnify pain. That becomes exhausting.
What we believe about ourselves, in relation to experiencing pain, affects its perception. Forgetting that the pain is time-limited affects its perception. Believing or perceiving that we have no agency in the moment affects its perception. For example, it always hurt more when a nurse put my dialysis needles in. When I learned to cannulate myself, my concentration on getting it right often obscured the pain from my full perception of it. In a way, I was too busy to notice it.
I want to clarify that this doesn’t mean tolerating all pain. That’s not a reasonable expectation of humans. Similarly, it doesn’t mean living up to the expectations of an inner voice, or another person, to not be bothered by pain. To experience great pain, and not have anyone around you (clinicians, family, or friends) acknowledge and validate that pain, can be traumatizing.
How you were treated as a child when you were in pain can shape your experience of pain with a chronic illness. Throughout all of this, as you expand your window of pain tolerance, make sure to treat yourself the way you wanted most to be treated when you were a sick toddler.
How you were treated as a child when you were in pain can also determine the level of tolerance you bring to a hospital stay. Hospitals are centres for treatment, but not for convalescence. Hospitals are designed for clinicians and staff, not patients. Sleep is challenging, night or day. Meal quality reflects “budgeting priorities.” Diagnostic tests rarely occur at the scheduled time, if at all.
Apart from whatever medical benefit your hospitalization might be giving, the challenges of being an in-patient can be demoralizing especially if you’re suffering or in pain. I’ll share what’s helped me.
First, do not be afraid to question clinicians or staff. Be assertive, but not belligerent. Ask what and ask why. And within rational limits, don’t be afraid to refuse cooperation if no one is explaining something to you. Overworked and rushed clinicians still owe you full disclosure on all aspects of your treatment, big and small. Despite their mission, clinicians do not have dominion over your body. Your ability to self-advocate can restore a sense of self-efficacy. If you are too sick for this, having a trusted friend or family member advocate for you can make all the difference (as it has for me).
Second, if you are mobile, get out of bed. A lot. (Unless there’s a medical or safety reason why you shouldn’t, of course.) Long-term bed-ridden hospital stays can weaken you to a surprising degree—and can cause major, life-threatening blood clots, known as deep-vein thrombosis. (I’ve had this.) Remaining in bed can reinforce the sense of taking on the role of playing a “patient,” engendering a kind of unconscious passivity. The experience of forward motion from walking can lift your energy and sense of agency. Grab your IV pole and do laps around the hallways.
Third, if you are mobile, get up every morning to brush your teeth, shave (if you shave), and shower. It can be surprisingly restorative when stuck in hospital. I have managed this with a fever, bent over with abdominal pain, and even when I was almost unable to walk and needed the assistance of an orderly. Afterwards, even a marginal sense of improvement raised my wherewithal.
Fourth, hospital meals, as bad as they are, can become the highlight of a dreary routine (except in the unfortunate event of an NPO order, which means no food or water). Choose healthy items for yourself, of course, but also indulge in comfort food when it’s available. If your appetite permits, order extra items. Not all meal portions satisfy, and snacks at 2 AM can help a sleepless night. Unless your diet is restricted, friends and family can bring in anything you’re craving.
Those are some concrete suggestions to help you tolerate what’s often otherwise a clinical, sterile environment where clinician empathy is hit-and-miss.
Being courageous does not exclude being scared, despite how movie heroes behave. As a patient, having courage is the willingness to go through with what needs to be done to stabilize your health and possibly save your life, even though you are terrified. Accordingly, there is no requirement for appearing stoic or indifferent to what you’re facing. Mindfully acknowledging and responding to your fear lets you forge willingly ahead on a path into uncharted territory. How you express your distress along the way does not reflect the courage with which you ultimately act. Rather, it reflects who you believe yourself to be in this context.
A comment I’ve often heard from others when they learn about my situation is, I wouldn’t be able to handle that. Yet people surprise themselves all the time by handling just that. Sometimes, the choice is rather simple: forge ahead along the path or succumb to the disease. The courage becomes not so much about personal character (as in the movies) but about the choice to survive.
Courage also comes from surrounding yourself with people who are truly there for you. They need not be experts at this, but just willing and able to witness your journey, and hold your hand.
Some people do not instinctively know how to just hold your hand, and their reaction to your situation and distress is to create more distress.
In the first months following my diagnosis, I sometimes complained about these sorts of people – to other people. Those other people would chide me. “They mean well,” and “they’re only trying to help” I’d be told. I’d feel bad and ungrateful, and so I’d attempt to respond to everyone’s input, so that I didn’t appear ungrateful. Two things happened. First, nothing changed. Second, I was exhausted by it.
There are at least three kinds of responses to your situation which you may encounter: unsolicited and ill-informed health advice; being told how to feel about things; and being insensitively treated, sometimes even from the people closest to you. People will often say “well, you look well!” because they aren’t familiar with how much chronic illness impacts you on the inside. This can cause friction with employers, who may not understand your need for extra sick time.
To manage people who cannot help you with what you need, you must draw boundaries. That may look like not disclosing your diagnosis to anyone except to those you trust, and to those you must. It may look like changing a conversation’s subject away from your situation. It may look like resolving not to explain to anyone why you are leaving a social function so early, or not going at all. It may look like turning down dinner invitations because few people truly understand how restrictive a renal diet really is.
Of all the topics I’ve touched on here, the topic of other people may perhaps be the most impactful. We cannot escape the influence of other people, whether by their presence or their absence. Other people can be a great source of comfort for you amidst this, or a source of pain. They are woven into your experiences of the fear, the uncertainty, the suffering, the hospital stays, and the courage. In an ideal situation, you want to surround yourself with happy, healthy people who can support you in their own ways.
However, not everyone is privileged to have that. Perhaps you don’t have that, or you don’t have enough of that. Perhaps you need something more, or something different as you navigate this. Until now, I haven’t brought my own experience of dialysis and transplantation into my work as a private practice therapist.
But today, on the 15th anniversary of my kidney transplant, I decided to offer this post to those of you who may be seeking support around your own experience. I have merely scratched the surface of these topics (what somatic interventions specifically? what do you mean by how I see myself?) and so you might have questions. I would be happy to help, and I invite you to reach out to me below.
* Thích Nhất Hạnh. No Mud, No Lotus. Berkeley, CA: Parallax Press, 2014. p. 11.
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