Winters are mild in Tennessee,” says Dan Jones, 42, his Southern drawl sugarcoating the harrowing depression that has frequently marked his 20years living with HIV. “But the trees lose their leaves; the sun hardly comes out; it rains a lot; and there’s just no color anywhere.” Indeed, Jones’ seasonal blues are as predictable as the autumn rain.
“It always comes on around mid-November, reminding me of Thanksgiving 1981,” he explains, “when my parents found a letter I’d written to a friend about my sexuality. Everyone was screaming about it in the car on the way to Grandma’s house for Thanksgiving dinner. When we got there, we had to smile and pretend nothing happened.” Jones’ parents threatened to take him to church to straighten him out. He escaped to Memphis instead—but can’t escape the memories.
As Jones was dealing with the family drama, he also suffered his first bout of pneumocystis pneumonia (PCP). Then his father died. The one-two punch made his already wintry symptoms unbearable. “I started having trouble staying on my HIV meds,” Jones recalls. “I’d go on and off them, and my doctor would yell at me, put his finger in my face and say, ‘Look, if you don’t take these meds, you’re going to die.’ I was so depressed I said, ‘Fine—let the virus kill me.’ I figured, what did I have to live for?”
Depression isn’t the only bummer people with HIV often brave as the days grow shorter—and holiday checkout lines grow longer. During the holiday season, society expects you to ramp up your social activity to maniacally festive highs and empty your wallet to prove your love and generosity. You may also have to spend time with family members who at best annoy you and at worst emotionally destroy you.
If you aren’t Christian or a part of the social, economic and cultural mainstream, it can seem as though your own life and culture is invisible, pushed aside to make room for a gingerbread family Christmas. The pressure to do and be more than you’re capable of can be particularly oppressive if you’ve lost your get-up-and-go to HIV. It’s enough to make you want to crawl under the comforter until January 2—and deny your emotional turmoil, deep-sixing it till summer returns.
But it is possible to do something about depression, whether it’s a mild case of winter blues or an all-out major depressive episode. When you’re trapped under a mountain of doldrums, taking the steps laid out here may not seem easy, but doing so could bring light to a long, dark winter. It may also save your life.
Judith Rabkin, PhD, professor of clinical psychology and psychiatry at Columbia University, says, “Most people with HIV live with a chronic, low-grade depression,”adding that Jones’ poor med adherence is common, too. Rabkin considers depression “a significant predictor of antiretroviral nonadherence” and a crucial reason people must monitor their moods. This is especially true during the holidays, when chaotic changes to your daily routine can further complicate adherence, in turn elevating the risk for developing HIV drug resistance. But when depression ices your heart and mind, it can obliterate your ability to respond even to serious threats like treatment failure.
That’s why, almost on a whim, Jones adopted Oscar, a pesky miniature schnauzer. He says it was one of the smartest moves he ever made: “My depression was so bad I didn’t want to leave the house. But a dog needs to be walked, and he just wouldn’t letup on me until I took him out.” The walks with Oscar got a little longer each day, and Jones slowly regained his strength. “If it weren’t for him, I wouldn’t be here. That daily routine of getting up and walking him keeps me going. He’s made the winter much easier on me.”
Having someone or something to care for can add purpose to life and keep you going. But Jones also takes the antidepressant Lexapro, which, he says,“helps a little.” In addition, he gives credit to the online HIV communities he’s found at websites like AIDSMeds.com. “I’m building anew family for myself,” he says.
Snap out of it? Yeah, right
We’ve all played the Grinch from time to time. When we’re surrounded by joyous holiday revelers, frantic shoppers and saccharin television morality tales in Technicolor animation, what once might have filled us with anticipation and excitement instead turns sharp and metallic and downright ghastly. “The holidays can be especially painful if families don’t get along or if money problems mean not being able to buy gifts,” says psychotherapist Karen Godfredsen, the mental health clinic director at the AIDS Resource Center of Wisconsin, in Milwaukee. She adds that when the time comes to play Secret Santa in the workplace or to provide family and friends with the best gift ever, it’s possible to strain your bank account and meds-stretched budget beyond immediate repair. Steve Tibbetts, a licensed independent clinical social worker in Minneapolis, agrees, saying, “With depression, there’s a powerful impulse to spend money you don’t have.” He adds that overspending is one of many unhealthy responses to the negative self-image HIV can sometimes bring.
Your blues ain’t like mine
One culprit seems to wreak more misery on HIVers than the average person:seasonal blues. Tibbetts knows the warning signs all too well. “What happens in winter is, people get into a bad cycle without realizing it,” he says. “Inactivity, irregular sleeping and eating—it all exacerbates depression.” Tibbetts, who has 20 years of experience in HIV mental health services and grief counseling, says that about half his HIV positive clients in the Twin Cities become more depressed in wintertime. Godfredsen adds that half her clients also become more depressed during winter: Milwaukee winters last nearly half the year, and temperatures frequently dip to 15 below.
“People are often trapped in their homes then, ” Godfredsen explains. When a 4:30 pm sunset makes even a walk in the park seem formidable, she says her clients begin to despair. She explains, “The coping strategies they use to deal with their HIV on warmer sunny days are no longer available to them in wintertime—even something as simple as sitting on the front porch chatting with the neighbors or meeting their friends for lunch.” The season also can have a physical impact. “The cold is extremely hard on people with weakened immune systems, particularly those who deal with chronic pain,” she says.
Recognizing depression in yourself—and sorting out the causes and severity—can be challenging (see “Mood Indigo” below). Some people may not immediately recognize winter depression, because it can feel a lot like fatigue.Dr. Rabkin says, “With HIV positive people, fatigue and depression are connected.”
One obvious sign of depression is a change in diet. Diana Johansen, a clinical dietitian at the Oak Tree Clinic, says that with HIV, there is no “one size fits all” eating pattern. Some people eat a lot more, specifically sweets, later in the day, though Johansen says, “The most common symptom is appetite loss or skipping meals.” Not only does this worsen problems like wasting and lipodystrophy, it’s bad for the head. Letting blood sugar levels drop too low reduces the supply of the feel-good chemical serotonin.
“Isolation is also a danger sign,” adds Godfredsen. “There is a tendency when winter comes to shut yourself in the house, when actually, it’s probably the worst thing you can do.”
Dan Jones now thinks he let too much time go by before seeking help. “People often don’t mention depression, let alone seasonal depression, to their HIV doctor,” echoes Tibbetts. “They’re afraid their doctor won’t know anything about their problem.” But when it comes to winter depression and HIV you can’t afford to keep mum or go it alone. And there’s no time like the present. If HIV advocates are right, dealing with depression now—rather than later—is a must. In 2006, the Ryan White Care Act—which covers not only medical care and mental health care for people with HIV—may next year be shifting a significant portion of funds away from the cities where many longtime PWAs live. Cash-strapped state governments have also proposed drastic cuts to their Medicaid programs. Both the private-insurance industry and the proposed (and possibly on-hold) Medicare drug benefit program are increasingly threatening greater restrictions on people’s access to mental healthcare and the newest medications for depression and anxiety. At a time when policy makers are thinking only about cuts to most social services and insurance companies struggle to rein in costs, HIV advocates may end up fighting a losing battle simply to maintain this year’s status quo concerning accessibility and funding for mental health services. These issues mean that people with HIV who have access to a social worker or case manager may want to explore their options.
S.A.D. about you
A particularly severe form of winter depression is a condition called seasonal affective disorder, or S.A.D. In the 1990s, Michael Terman, MD, a researcher with the New York Psychiatric Institute, proved a connection between a lack of sunlight and depressed moods, thus pioneering the use of light therapy for depression. “A case of S.A.D.fits the definition of a major depressive episode,” he says. That means a minimum of two weeks of persistent symptoms, including obvious changes in sleep patterns and appetite, feelings of hopelessness, possibly suicidal thoughts and difficulty concentrating. Dr. Terman emphasizes that a generic case of mild “winter blues” is far more common than a clinically diagnosable case of S.A.D. He says the difference between S.A.D. and winter blues is one of degree and adds, “Whereas S.A.D. is debilitation, people with winter blues can generally go about their daily activities. They may feel miserable, but they are able to function in winter. They slog through it.”
Both S.A.D.and winter blues can be treated, says Dr. Terman. Treatment might mean antidepressants or light therapy (spending time in front of specially designed light boxes that mimic sunlight without its damaging UV rays). Light therapy works by resetting the body’s internal clock (circadian rhythms). Dr. Terman’s research shows that even nonseasonal depression can be lifted by light therapy, which can be used along with antidepressants. If you think you might have S.A.D., though, Dr. Terman doesn’t recommend trying to diagnose yourself. As with any serious form of depression, seeking help from a professional is critical.
Tell me about it!
A psychiatrist, therapist or support counselor can be more than a great resource for diagnosing and treating depression of all kinds. They can also provide practical suggestions for HIV holiday survival. Tibbetts frequently offers this kind of advice to clients: “Make a holiday plan and make it early,” he says. According to him, a central part of that plan is to “decide for yourself what’s important this year. This may mean visiting old friends instead of relatives. If your family makes you miserable, some boundary setting is probably in order. Consider cutting a weeklong family visit down to two days. Invite people to your house rather than traveling.”
“With any kind of depression, you need to put your own well-being first,” says Tibbetts. This is even more crucial if you’re recovering from addiction or grew up in a family where substance abuse is a problem. The holiday season is full of emotional triggers that can make you want to reach for a drink or a drug and that can lead to skipping meds and an even deeper plunge into depression. Cathy Reback, a researcher on HIV and substance abuse with the Friends
Research Institute and the Van Ness Recovery House in Los Angeles, offers this holiday advice to people with HIV in their first year of recovery. “Go to clean-and-sober events. Bring a friend who is clean and sober with you on a family visit. The most important thing to is to recognize that the holidays are often difficult for people in recovery, but with help, you can get through it. You don’t have to relapse.”
Home is where the hurt is
“My holiday depression began before I tested positive,” says John Kushik, 24. In 1998, when his mother died of cancer, he lost his only close family member. Kushik says, “After she died, Christmas didn’t feel like Christmas anymore.” Still, Kushik tried to make the best of it for the next five years with the rest of his family in Richmond, Virginia.“Before my mom died I looked forward to Christmas. Afterward, I’d go home to my family, and my dad would make negative comments about my lifestyle, that I couldn’t keep a job.” His sister, he says, also wasn’t much help. “I really felt alone.”
In 2003, he tested positive and decided to leave Richmond for sunny Biloxi, Mississippi.“I was attracted to the ocean, the excitement of a coastal city.” He decided to stop going home for the holidays. “I asked myself, ‘Why should I go back to Richmond and expose myself to all that negativity?’” But as usual, Kushik’s depression kicked in that year around mid-November. “My friends started asking me what was wrong.” He became quiet, withdrawn and moody.
“The holidays are a time of memory [for many],” says Tibbetts, “and some of these memories are painful.” Feelings of grief over a lost loved one can intensify during the holidays, even if you thought you were getting over it. “If your own family never accepted your HIV status or your sexuality or if they just aren’t supportive of you,” says Tibbetts, “it can make the holidays’ familial focus particularly painful. But just because you’re related to them, doesn’t mean you have to spend the holidays with your family of origin.
“People ask, ‘You mean I can do that?’ Well, yes, you can,” Tibbetts says. “Rather than just assume you need to spend time with people who trigger your depression or addictive patterns, think about who in your life truly supports you and spend time with them.” Redesigning the holidays for yourself may be a creative challenge, but as Kushik discovered, it’s worth the effort.
“It was a tough decision,” Kushik says. “I’ve always been a family-oriented person, but what I needed was something my family just wouldn’t give me.” Instead, Kushik turned to his friends for support and was pleasantly surprised. “I found I could really open up to them. They started inviting me to dinners and parties; they opened their homes tome.”
In August, Hurricane Katrina wiped out Kushik’s apartment in Biloxi, and he has now relocated to Chicago. Despite it all, he’s surprisingly upbeat. “I may have lost my possessions, but I didn’t lose my friends. Friends aren’t replaceable.” Kushik is excited about Chicago’s HIV support services and thinks it’ll be a better place to manage his virus and his holiday depression. He isn’t worried about Christmas in the windy city this year. “I’m going to invite a few close friends over for dinner and definitely decorate the apartment. That’s something Mom was always big on.”
Finding your place in the depression spectrum
The symptoms of clinical depression can overlap with HIV-related fatigue. See a pro if you or your friends notice changes in any of the following:
- You lose interest in food, skip meals or binge on sweets and starches.
SLEEP & ENERGY
- Fatigue keeps you in bed most mornings.
- Your exercise routine starts limping.
- You sleep later every day or take long naps in the afternoon—but don’t awake refreshed.
- Answering your phone or spending time with friends and family starts becoming a chore.
THINKING & MEMORY
- It becomes a struggle to think or concentrate.
- You miss appointments or work, fall behind on bills and skip med doses.
- You cry frequently.
- You react to sunset with anxiety or despair (more likely with S.A.D.).
- You think frequently about death or suicide.
- Feelings of sadness or anger grow more frequent.
Take Dr. Terman’s online test to check your S.A.D. symptoms. Go to www.cet.org and click on the “Personalized Inventory for Depression and S.A.D.” offered in the text menu on the left side. Print the results, and bring them to your HIV doc or mental health counselor.
Holiday traveling can be stressful when airports are packed, flights are delayed and winter storms scuttle the best-laid plans. Whether you’re motoring on the road or flying the not-so-friendly skies, here are some tips for taking care of mind and body:
- Pack your meds first, making sure to include a two-day backup supply, in case you’re snowed in or get stuck in an airport.
- Pills should go in a carry-on bag and not be checked with luggage.
- Use tricks to remind yourself to take your pills. Write yourself notes, or travel with a mini travel alarm clock in your pocket set to go off at dosing time.
- Don’t skip meals! Airlines barely feed anyone these days, so bring your own food and water. Don’t expect to find food that meets your needs in airports or on the road.
- Drink plenty of water, especially on airplanes, where high altitudes and dry air sap body fluids faster than you can say bronchitis.
- If you’re flying several hours, book ahead for a special meal, if possible.
- If you’re leaving the country, see your doctor about preventive medicine and extra vaccinations for infectious diseases. You may also want to call the federal Centers for Disease Control and Prevention (CDC) in Atlanta at 404.332.4555 for travel advisories or go to www.cdc.gov/travel.
- Get plenty of sleep before, during and after the trip.
- If you see a psychotherapist, get an emergency or on-call phone number, in case you need to talk.
- Members of 12-step programs should note the times and locations of meetings at your destination city before leaving home. Check the websites of groups like AA, NA and Al-anon.