A theme that frequently comes up with my chronically ill psychotherapy patients is whether they are making too big a deal of their illness or not a big enough deal. People often bounce back and forth between the idea that their immense sadness, worry, anger or fatigue is overblown, that they should just “get on with it”— and the sense that maybe they’ve been minimizing how serious and consequential their illness really is. They’re alternately guilty, ashamed, and anxious for paying too much attention to their health, and guilty, ashamed, and anxious that they’re not paying enough attention. Oscillating between these two positions –two sides of the same coin– can keep folks mired in self-doubt.
Let me say from the outset that I believe being chronically ill is a big deal.
It’s a big deal
It’s a big deal to feel different, or marginalized, or resented for your limitations. It’s a big deal to never know when symptoms will flare, or pain will debilitate, or fatigue will overwhelm. It’s a big deal to hide your symptoms or treatments and try to “pass” as healthy for fear others will not accept you for who you are. It’s a big deal to live with the uncertainty of insurance coverage and costs, to try to fit your job or career path into the space of your illness requirements (or vice versa), and to face discrimination, intolerance, and ignorance at your workplace (or school, or elsewhere). It’s a big deal that doctors (as well as family or friends) don’t always believe or respect or listen to your account of how chronic illness affects you, and a big deal when you feel judged for poor “self-management” or being “non-compliant.” It’s a big deal to have close friends and family (including your children, if you have them) who have no idea how you’re feeling and are impatient when you cancel plans or mention your limits. It’s a big deal to always have illness on your mind, to feel like you’re are falling short in self-care, and in some cases to know your illness may shorten your life.
Acknowledging suffering
These topics flow like a wellspring in psychotherapy with chronically ill patients, who outside of the therapy room are often uncertain whether (or how) they’re allowed to acknowledge their own physical and psychological suffering– and even whether it’s self-indulgent to suffer at all. Do they really deserve to “go easy” on themselves? To slow down? To complain? Are they being lazy? After all, there might be people who are worse off, so perhaps they shouldn’t feel so bad. (But they do). Doctors and other health professionals may convey the message that it’s no big deal to follow all the treatment recommendations, that other patients do just fine. Health care providers often don’t realize that in trying to convey optimism, they may be minimizing the practical and emotional burden of self-care and disease management practices on their patients.
Parents, too, in a well-meaning effort to make their child feel “normal”—like they are no different or “less than” healthier children – may inadvertently convey the message that it’s not ok to have limitations, to acknowledge them, or feel sad about them. Emphasizing the expectation that children should do just exactly what other kids do, parents may urge against “whining,” tell their kids to “get off the pity pot,” or cheer them on with “I know you can do it!” Feeling sad about your illness may come to feel like weakness. Sometimes, those kids grow up to be chronically ill adults who suppress their feelings and believe they need to be super-achievers who never slow down, never ask for extensions on college papers, never arrange accommodations at work, and never seek emotional support around life with illness.
A “stiff upper lip”
In the dominant white, Western, culture, we’re supposed to keep a “stiff upper lip” and comply with the “Protestant work ethic.” Expressing frustration, or remarking on the discomfort or fatigue of chronic illness is often looked down upon as complaining. And complaining can make people around us feel uncomfortable, in part because they don’t know what to do or how to respond. Giving voice to the pain or stress of chronic illness also disrupts the illusion that everything will be as it should be if we just keep our “nose to the grindstone,” “keep moving ahead,” and keep “pulling our weight” in a system that doesn’t allow for differing capacities, energies, or bodies (and, in fact, penalizes or reviles them). It can be hard not to internalize the doubts or implied criticism by others that if only you weren’t feeling sorry for yourself and had a more optimistic, tougher attitude you’d be just fine. For people of color, who face structural violence and everyday racism (and may feel they and their children need to work twice as hard and be always excellent to even have a chance), exposing the vulnerability of illness may lead to further discrimination and risk.
“Passing” as healthy
In our efforts to appear just as capable as everyone else, to “pass” as healthy when we are unwell, people with chronic health problems may be doing ourselves harm by not slowing down to recognize, monitor, and treat symptoms, and refusing to acknowledge limitations. Many try to push illness to the back of their minds in order to excel at work or school, or be the life of the party, an intrepid adventurer, or a giving “helper” to others. And as desirable as those things may seem, they can also mask a painful acknowledgment of limitation and difference. Minimizing limitations may reflect a desire to blot out the possibility of worsening symptoms, medical complications, disability, or shortened life expectancy in the future, or to pretend that it doesn’t matter.
Acts of resistance
Finally, what health care providers have too often called “noncompliance” with treatment can sometimes be acts of resistance: resistance to what may feel like controlling parents, demanding or judgmental health care providers, the humiliating sense of diminishment people may carry, and the physical constraints imposed by chronic illness. Resistance to health demands can be a way of defying guilt or shame, and coping with anxiety. Children and especially teens may rebel against parents who rigidly enforce adherence, or stringently curtail their child’s independence for fear they’ll get sick—embarrassing them or undermining their sense of competence. It is an incredibly tricky balancing act for parents trying to help their children feel as capable as other “normal” kids (while also making room for sadness and frustration), on the one hand, and keeping their children’s diseases well-managed (while avoiding rebellious acting out against self-care), on the other. Many chronically ill adults in therapy struggle with the long-term effects of their parents’ dilemma.
Finding balance
The effort to manage all these conflicting emotions, thoughts, and impulses often contributes to chronic illness burn out. So how to find the balance? Here are 6 things to consider:
1. Bringing up the emotional impact of our chronic illnesses to health care providers, even if they don’t ask first or listen well, can be an important step in finding our voices and recognizing our dilemma.
2. Opening the door to conversation with family and friends can make us feel accompanied on the illness path, and help regulate our sense of making too big a deal or not enough of a big deal. We can recognize that people close to us may be confused or uncertain about when it’s ok to ask how we’re feeling, and we can give them positive reinforcement when they do ask (even if their questions are annoying or poorly timed!). “I really appreciate your asking” or “I’d be glad to explain more about it some other time—it makes me feel less alone when friends want to learn,” may truly help us feel less alone (even if we also feel it shouldn’t be our job to encourage others). And sometimes being direct—“I need you to understand that I’m having a hard time dealing with my [name your illness] right now”—can elicit an offer of help or a willing ear. Practicing how to assert needs, while also recognizing others may be unable to meet them and may disappoint us, is a crucial step in finding our authentic voices as people coping with chronic illness.
3. Many of my patients have found that following chronic illness twitter (for example, #chronic illness or #invisible illness or #spoonies) and reading chronic illness-specific blogs or listening to illness-related podcasts helps them find perspective, as they see how others struggle to find balance.
4. Support groups, psycho-educational groups, and professionally facilitated psychotherapy groups for people living with chronic illness can be tremendous sources of insight and support.
5. Working to make the needs of people with chronic illness and other disabilities visible by advocating in the “public square” for equitable access and accommodation can have tremendous impact in shifting public consciousness of the things we live and struggle with every day (e.g. note that discussion of the exorbitant cost of insulin found its way into the Democratic presidential primary debates—through advocacy!).
6. And finally, individual counseling with a therapist experienced in chronic illness can help you understand your dilemmas and ambivalence around your illness, as well as your grief, so you can move forward with more ease.
It’s a new year: reach out
Have you found yourself caught between feeling that you’re making too big a deal of your chronic illness, and not enough of a big deal? Consider making an appointment to talk about it. Call me at (212) 663-5553.
Please note: all patient anecdotes and experiences that may be described in this blog are composites, and no individual’s story will ever be shared.
