Effective antiretroviral therapy has given people with HIV our lives back. But with this new lease on life can come responsibility and, for many of us, stress. Along with all the ordinary tasks of life, we are living with a demanding chronic illness. We juggle doctors' appointments, bloodwork and medication schedules with employment, school or taking care of our loved ones -- or all three!
With all of these responsibilities, it's easy to lose your equilibrium and forget to put yourself first. When life has you in a stranglehold, it might seem hard to give yourself permission to, say, not take phone calls during dinner. But people with HIV from across the country affirm that putting time aside for self-care is crucial to our survival and well-being.
Why Is Self-Care So Crucial?
When you've got a lot on your plate, caring for yourself can seem selfish and indulgent -- something to feel guilty about. We might feel that it isn't "right" to do things that are purely pleasurable. We might have internalized a message that we should "do without."
But, in fact, you need to take good care of yourself in order to be available for those who are important to you. Ignoring your own needs can make you sick or can worsen existing health problems, whereas cultivating self-care practices can bring meaning and fulfillment to your life. As you care for yourself, you will find that you are more present, caring and available to others, less likely to "lose your balance" over time and, when challenges arise, more able to quickly restore it.
How to Tell When the Balance Is Tipping
Claudia Medina, a 42-year-old Latina woman who has been living with HIV for two decades, had met her life goal of working in an AIDS service organization. Her colleagues were "awesome" and her work was meaningful. But her job as an advocate for prisoners and ex-prisoners was also stressful: The issues of oppression she was dealing with on a daily basis eventually took a toll on her personally. She knew something was wrong when she realized that although she spent her days getting proper identification for the people she worked with, her own passport had expired and her SIN card needed to be replaced. And she wasn't finding the time to do her yoga, work out or take her vitamins.
Medina's supervisor could see that she was starting to lose her equilibrium and suggested that she limit her committee work and stop taking work home with her. Looking back, Medina realizes that she wasn't giving herself permission to care for herself. "I wanted to do everything for everybody," she says. "I had this feeling that if I didn't do it, it wasn't going to get done."
Her stress began to show itself on a physical level: She gained weight and became increasingly forgetful. Her organizational and time management skills deteriorated. Even though she had written herself reminders -- on her phone, on her computer and in her daytimer -- she forgot the dates of important workshops and details about where she was giving presentations. She started to wonder if she was experiencing HIV-related neurocognitive problems.
Gradually, Medina stopped socializing and became more isolated. She found it difficult to relax and sleep at night, and she found herself drinking more on the weekends to unwind. The twin demons of anxiety and depression, which she has dealt with throughout her life, were harder to keep under control. "There was so much negativity in my life. My personal life was spilling over into my work, and I was having meltdowns at work. Every day began to feel like a chore, and it was hard to get up in the mornings."
Tom Hilton didn't realize that he had lost the balance in his life until his family and friends held an intervention. "Stimulants, especially coke, crack and meth, were big for me," he says. The 49-year-old Prince Edward Islander now acknowledges that a sense of unworthiness and internalized homophobia compelled him to "run to anyone or anything that could take me away from looking seriously at myself." These factors also kept him from learning about safer sex and HIV, resulting in his HIV diagnosis in 1992.
Luckily, Hilton had friends and family who cared about him. He ruefully admits, "I swallowed my pride, listened to what these people were saying to me and decided to move back home to PEI and give myself a fair shot at a healthy life."
Does any of this sound familiar? It does to me. By the time I decided that I needed to restore the balance in my life, I was feeling and doing many of the same things as Claudia and Tom. No energy for work? Check. Negativity? Depression? Anxiety? Check, check and check. Increased substance use? Check. Disrupted sleeping and eating patterns? Double check.
People with HIV can learn to stay balanced through conscious self-care. It takes attention and practice. As Hilton says, "It isn't easy to take myself seriously, it's much easier to sabotage myself."
3 Simple Questions
A journey of self-care can begin with three simple questions:
- What do I need more of right now?
- What do I need less of?
- What is causing me to feel stressed out? Why?
Now think of a simple activity you could do in the next week that would address your responses. For example, if you feel that the demands of family, friends or work are overwhelming, consider giving yourself a half-hour of daily "me" time. Turn off your phone, shut your door and listen to some soothing music.
Check in with yourself at the end of the week and see how this small intervention has made you feel. You may want to continue this routine, or you may want to switch things up, substituting the musical interlude with a warm bath by candlelight, for example.
Just Say "No!"
It can also help to make an agreement with yourself about those things that you want out of your life: your "no!" list. This is part of developing healthy boundaries. For example, if your space is cluttered and chaotic, make an agreement to keep only those things that have meaning for you. Throw the rest out! Or have a garage sale! Other things that might go on a "no" list are: gossiping, fretting about the past, sleeping with your cellphone in the bedroom.
Post your resolutions in a place where you can see them. Share them with others so they understand what you are doing. But remember to be kind to yourself; if you slip, don't beat yourself up, just pick up where you left off.
In Medina's case, she resolved to avoid multitasking, which left her feeling unfocused. "Multitasking is the devil," she declares. "I compartmentalize things much more now. I start and finish a task before moving on to the next one."
Cultivate Positive Relationships
At first Medina thought it was going to be impossible to disengage from her work in the HIV sector because she saw her identity as being so wrapped up in her job. "Now, I'm a different person," she says. "I see that there are so many different aspects to myself. My body is starting to balance out, I sleep better and I no longer experience the side effects of hyperactivity and anxiety from my HIV medications." She feels grateful for the support of family and friends, "especially my PHA friends. Lots of PHA friends have come back into my life -- as well as new friends," she adds, smiling.
Hilton believes that returning to Charlottetown to be close to his family and friends allowed him to set the boundaries he needed to develop healthy habits, like better sleeping and a more wholesome diet, and to think more clearly. "It is really courageous to recognize that we need the help of others," he says. "I've been home in PEI for eight years now and living near my family helps to keep me on the straight and narrow."
Back to Health Basics
Observing health basics also creates balance in Hilton's life. Getting enough sleep is important, he says. "I try to get a nap in every day, if possible." He works out regularly, eats "real food that I cook myself" and credits an honest, respectful relationship with his HIV doctor as an essential part of his self-care. "I take my meds practically every day," he says. "I like having an undetectable viral load; it's motivating."
Montrealer Bruno Lemay agrees that going back to health basics is key. "When I get stressed out, I tend to bury myself in work and school. I can neglect my relationships and my physical health, and I end up feeling anxious and have trouble sleeping. So I hit the gym. Physical activity makes me feel better. I'm more relaxed and I sleep well. And when I feel better, I can be a better partner."
Take Yourself Seriously
Hilton and Medina both feel that investing in themselves through education is an important element of their self-care. Medina has just returned to school to complete her studies in community work and social services at Toronto's George Brown College, with the goal of eventually obtaining a bachelor of social work. Hilton recently graduated with a Master of Education from the University of Prince Edward Island and was awarded the Governor General's Gold Medal for his thesis, Schooling and Practices of Freedom of ‘Out' Queer Youth on Prince Edward Island. He is currently working on a project with the PEI Human Rights Commission that will provide teachers with tools to engage with social justice issues in the classroom.
Take Time for Traditions and Nature
Claudette Cardinal, a Cree woman living in Vancouver (see also Visual AIDS), finds that "city energy" can sometimes make her feel squirrelly. When she starts to feel that familiar tightness in the pit of her stomach, she calms herself through traditional practices such as smudging with sweetgrass, cedar, buffalo sage and traditional tobacco. She knows a "sacred spot" in the forest in Stanley Park where she goes to find silence and ground herself.
Saltspring Islander Margarite Sanchez also looks to nature for solace. "If I'm really stressed, I'll take a power walk in the forest or by the ocean," she says. "That gets me breathing deep and I come back with a much clearer mind. Another super self-care strategy is having a hot bath in my outdoor cast-iron bathtub! That is my ritual every time I come home from the city. It melts all my worries away."
As for me, my physician's referral to mindfulness-based cognitive behavioural therapy provided me with important tools to rebalance my life. Through a program that included exercises in meditation, deep breathing and goal setting, I have become more aware of my negative thoughts and feelings and how they were leading me to behave in unhealthy ways.
These examples from people with HIV show that self-care is very much an individual practice. There are no rules for how, when or what to do, though many mental health practitioners recommend taking 30 minutes a day to do something nice for yourself. So, go ahead and show yourself that you care! You'll feel happier and healthier for it.
A Cheap and Cheerful Self-Care Exercise
At your local drug store, purchase a single-application face mask and a nice-smelling bar of soap. When you get home, turn on some soothing music. Give your hands and face a good wash in warm water with your new bar of soap. Pat your face dry with a clean towel. Now apply the face mask according to the instructions.
Lie down and feel the face mask do its work. Listen to your music. Be aware of your breath, as you inhale and exhale. After about 20 minutes, remove the mask with warm water, pat your face dry and look in the mirror at your beautiful face. There! You just practiced self-care!
The important thing here isn't that your face is clean; it's that you took the time to treat yourself well and make yourself feel good. There are lots of other ways you can practice self-care every day: eat your lunch in the sun, drink lots of water (add lemon or cucumber for flavour), stop and make yourself a cup of herbal tea, or buy yourself a magazine and read it in bed. Show yourself some love!
Darien Taylor is CATIE's former director of program delivery. She cofounded Voices of Positive Women and is a recipient of the Queen Elizabeth II Diamond Jubilee Medal, awarded to honour significant contributions and achievements by Canadians. Darien has been living with HIV for more than 20 years.