Winters are mild in Tennessee,” says Dan Jones, 42, his Southern drawlsugarcoating the harrowing depression that has frequently marked his 20years living with HIV. “But the trees lose their leaves; the sun hardlycomes out; it rains a lot; and there’s just no color anywhere.” Indeed,Jones’ seasonal blues are as predictable as the autumn rain.
“Italways comes on around mid-November, reminding me of Thanksgiving1981,” he explains, “when my parents found a letter I’d written to afriend about my sexuality. Everyone was screaming about it in the caron the way to Grandma’s house for Thanksgiving dinner. When we gotthere, we had to smile and pretend nothing happened.” Jones’ parentsthreatened to take him to church to straighten him out. He escaped toMemphis instead—but can’t escape the memories.
As Jones wasdealing with the family drama, he also suffered his first bout ofpneumocystis pneumonia (PCP). Then his father died. The one-two punchmade his already wintry symptoms unbearable. “I started having troublestaying on my HIV meds,” Jones recalls. “I’d go on and off them, and mydoctor would yell at me, put his finger in my face and say, ‘Look, ifyou don’t take these meds, you’re going to die.’ I was so depressed Isaid, ‘Fine—let the virus kill me.’ I figured, what did I have to livefor?”
Depressionisn’t the only bummer people with HIV often brave as the days growshorter—and holiday checkout lines grow longer. During the holidayseason, society expects you to ramp up your social activity tomaniacally festive highs and empty your wallet to prove your love andgenerosity. You may also have to spend time with family members who atbest annoy you and at worst emotionally destroy you.
If youaren’t Christian or a part of the social, economic and culturalmainstream, it can seem as though your own life and culture isinvisible, pushed aside to make room for a gingerbread familyChristmas. The pressure to do and be more than you’re capable of can beparticularly oppressive if you’ve lost your get-up-and-go to HIV. It’senough to make you want to crawl under the comforter until January2—and deny your emotional turmoil, deep-sixing it till summer returns.
Butit is possible to do something about depression, whether it’s a mildcase of winter blues or an all-out major depressive episode. Whenyou’re trapped under a mountain of doldrums, taking the steps laid outhere may not seem easy, but doing so could bring light to a long, darkwinter. 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 considersdepression “a significant predictor of antiretroviral nonadherence” anda crucial reason people must monitor their moods. This is especiallytrue during the holidays, when chaotic changes to your daily routinecan further complicate adherence, in turn elevating the risk fordeveloping HIV drug resistance. But when depression ices your heart andmind, it can obliterate your ability to respond even to serious threatslike treatment failure.
That’s why, almost on a whim, Jonesadopted Oscar, a pesky miniature schnauzer. He says it was one of thesmartest moves he ever made: “My depression was so bad I didn’t want toleave 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 littlelonger each day, and Jones slowly regained his strength. “If it weren’tfor him, I wouldn’t be here. That daily routine of getting up andwalking him keeps me going. He’s made the winter much easier on me.”
Havingsomeone or something to care for can add purpose to life and keep yougoing. But Jones also takes the antidepressant Lexapro, which, he says,“helps a little.” In addition, he gives credit to the online HIVcommunities he’s found at websites like AIDSMeds.com. “I’m building anew family for myself,” he says.
Snap out of it? Yeah, right
We’veall played the Grinch from time to time. When we’re surrounded byjoyous holiday revelers, frantic shoppers and saccharin televisionmorality tales in Technicolor animation, what once might have filled uswith anticipation and excitement instead turns sharp and metallic anddownright ghastly. “The holidays can be especially painful if familiesdon’t get along or if money problems mean not being able to buy gifts,”says psychotherapist Karen Godfredsen, the mental health clinicdirector at the AIDS Resource Center of Wisconsin, in Milwaukee. She adds that when the time comes to play Secret Santa in the workplaceor to provide family and friends with the best gift ever, it’s possibleto strain your bank account and meds-stretched budget beyond immediaterepair. Steve Tibbetts, a licensed independent clinical social workerin Minneapolis, agrees, saying, “With depression, there’s a powerfulimpulse to spend money you don’t have.” He adds that overspending isone of many unhealthy responses to the negative self-image HIV cansometimes bring.
Your blues ain’t like mine
Oneculprit seems to wreak more misery on HIVers than the average person:seasonal blues. Tibbetts knows the warning signs all too well. “Whathappens in winter is, people get into a bad cycle without realizingit,” he says. “Inactivity, irregular sleeping and eating—it allexacerbates depression.” Tibbetts, who has 20 years of experience inHIV mental health services and grief counseling, says that about halfhis HIV positive clients in the Twin Cities become more depressed inwintertime. Godfredsen adds that half her clients also become moredepressed during winter: Milwaukee winters last nearly half the year,and temperatures frequently dip to 15 below.
“People are oftentrapped in their homes then, ” Godfredsen explains. When a 4:30 pmsunset makes even a walk in the park seem formidable, she says herclients begin to despair. She explains, “The coping strategies they useto deal with their HIV on warmer sunny days are no longer available tothem in wintertime—even something as simple as sitting on thefront porch chatting with the neighbors or meeting their friends forlunch.” The season also can have a physical impact. “The cold isextremely hard on people with weakened immune systems, particularlythose who deal with chronic pain,” she says.
Recognizingdepression in yourself—and sorting out the causes and severity—can bechallenging (see “Mood Indigo,” below). Some people may not immediatelyrecognize winter depression, because it can feel a lot like fatigue.Dr. Rabkin says, “With HIV positive people, fatigue and depression areconnected.”
One obvious sign of depression is a change indiet. Diana Johansen, a clinical dietitian at the Oak Tree Clinic, saysthat with HIV, there is no “one size fits all” eating pattern. Somepeople eat a lot more, specifically sweets, later in the day, thoughJohansen says, “The most common symptom is appetite loss or skippingmeals.” Not only does this worsen problems like wasting andlipodystrophy, it’s bad for the head. Letting blood sugar levels droptoo low reduces the supply of the feel-good chemical serotonin.
“Isolationis also a danger sign,” adds Godfredsen. “There is a tendency whenwinter comes to shut yourself in the house, when actually, it’sprobably the worst thing you can do.”
Dan Jones now thinks helet too much time go by before seeking help. “People often don’tmention depression, let alone seasonal depression, to their HIVdoctor,” echoes Tibbetts. “They’re afraid their doctor won’t knowanything about their problem.” But when it comes to winter depressionand HIV you can’t afford to keep mum or go it alone. And there’s notime like the present. If HIV advocates are right, dealing withdepression now—rather than later—is a must. In 2006, the Ryan WhiteCare Act—which covers not only medical care and mental health care forpeople with HIV—may next year be shifting a significant portion offunds away from the cities where many longtime PWAs live. Cash-strappedstate governments have also proposed drastic cuts to their Medicaidprograms. Both the private-insurance industry and the proposed (andpossibly on-hold) Medicare drug benefit program are increasinglythreatening greater restrictions on people’s access to mental healthcare and the newest medications for depression and anxiety. At a timewhen policy makers are thinking only about cuts to most social servicesand insurance companies struggle to rein in costs, HIV advocates mayend up fighting a losing battle simply to maintain this year’s statusquo concerning accessibility and funding for mental health services.These issues mean that people with HIV who have access to a socialworker or case manager may want to explore their options.
S.A.D. about you
Aparticularly severe form of winter depression is a condition calledseasonal affective disorder, or S.A.D. In the 1990s, Michael Terman,MD, a researcher with the New York Psychiatric Institute, proved aconnection between a lack of sunlight and depressed moods, thuspioneering the use of light therapy for depression. “A case of S.A.D.fits the definition of a major depressive episode,” he says. That meansa minimum of two weeks of persistent symptoms, including obviouschanges in sleep patterns and appetite, feelings of hopelessness,possibly suicidal thoughts and difficulty concentrating. Dr. Termanemphasizes that a generic case of mild “winter blues” is far morecommon than a clinically diagnosable case of S.A.D. He says thedifference between S.A.D. and winter blues is one of degree and adds,“Whereas S.A.D. is debilitation, people with winter blues can generallygo about their daily activities. They may feel miserable, but they areable to function in winter. They slog through it.”
Both S.A.D.and winter blues can be treated, says Dr. Terman. Treatment might meanantidepressants or light therapy (spending time in front of speciallydesigned light boxes that mimic sunlight without its damaging UV rays).Light therapy works by resetting the body’s internal clock (circadianrhythms). Dr. Terman’s research shows that even nonseasonal depressioncan be lifted by light therapy, which can be used along withantidepressants. If you think you might have S.A.D., though, Dr. Termandoesn’t recommend trying to diagnose yourself. As with any serious formof depression, seeking help from a professional is critical.
Tell me about it!
Apsychiatrist, therapist or support counselor can be more than a greatresource for diagnosing and treating depression of all kinds. They canalso provide practical suggestions for HIV holiday survival. Tibbettsfrequently offers this kind of advice to clients: “Make a holiday planand make it early,” he says. According to him, a central part of thatplan is to “decide for yourself what’s important this year. This maymean visiting old friends instead of relatives. If your family makesyou 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.”
“Withany kind of depression, you need to put your own well-being first,”says Tibbetts. This is even more crucial if you’re recovering fromaddiction or grew up in a family where substance abuse is a problem.The holiday season is full of emotional triggers that can make you wantto reach for a drink or a drug and that can lead to skipping meds andan even deeper plunge into depression. Cathy Reback, a researcher onHIV and substance abuse with the Friends
Research Institute andthe Van Ness Recovery House in Los Angeles, offers this holiday adviceto people with HIV in their first year of recovery. “Go toclean-and-sober events. Bring a friend who is clean and sober with youon a family visit. The most important thing to is to recognize that theholidays are often difficult for people in recovery, but with help, youcan get through it. You don’t have to relapse.”
Home is where the hurt is
“Myholiday depression began before I tested positive,” says John Kushik,24. In 1998, when his mother died of cancer, he lost his only closefamily member. Kushik says, “After she died, Christmas didn’t feel likeChristmas anymore.” Still, Kushik tried to make the best of it for thenext five years with the rest of his family in Richmond, Virginia.“Before my mom died I looked forward to Christmas. Afterward, I’d gohome to my family, and my dad would make negative comments about mylifestyle, that I couldn’t keep a job.” His sister, he says, alsowasn’t much help. “I really felt alone.”
In 2003, he testedpositive and decided to leave Richmond for sunny Biloxi, Mississippi.“I was attracted to the ocean, the excitement of a coastal city.” Hedecided to stop going home for the holidays. “I asked myself, ‘Whyshould I go back to Richmond and expose myself to all thatnegativity?’” But as usual, Kushik’s depression kicked in that yeararound mid-November. “My friends started asking me what was wrong.” Hebecame quiet, withdrawn and moody.
“The holidays are a time ofmemory [for many],” says Tibbetts, “and some of these memories arepainful.” Feelings of grief over a lost loved one can intensify duringthe holidays, even if you thought you were getting over it. “If yourown family never accepted your HIV status or your sexuality or if theyjust aren’t supportive of you,” says Tibbetts, “it can make theholidays’ familial focus particularly painful. But just because you’rerelated to them, doesn’t mean you have to spend the holidays with yourfamily of origin.
“People ask, ‘You mean I can do that?’ Well,yes, you can,” Tibbetts says. “Rather than just assume you need tospend time with people who trigger your depression or addictivepatterns, think about who in your life truly supports you and spendtime with them.” Redesigning the holidays for yourself may be acreative challenge, but as Kushik discovered, it’s worth the effort.
“Itwas a tough decision,” Kushik says. “I’ve always been a family-orientedperson, but what I needed was something my family just wouldn’t giveme.” Instead, Kushik turned to his friends for support and waspleasantly surprised. “I found I could really open up to them. Theystarted inviting me to dinners and parties; they opened their homes tome.”
In August, Hurricane Katrina wiped out Kushik’s apartmentin Biloxi, and he has now relocated to Chicago. Despite it all, he’ssurprisingly upbeat. “I may have lost my possessions, but I didn’t losemy friends. Friends aren’t replaceable.” Kushik is excited aboutChicago’s HIV support services and thinks it’ll be a better place tomanage his virus and his holiday depression. He isn’t worried aboutChristmas in the windy city this year. “I’m going to invite a few closefriends over for dinner and definitely decorate the apartment. That’ssomething Mom was always big on.”
Finding your place in the depression spectrum
Thesymptoms of clinical depression can overlap withHIV-related fatigue. See a pro if you or your friends notice changes inany 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.
TakeDr. Terman’s online test to check your S.A.D. symptoms. Go towww.cet.org and click on the “Personalized Inventory for Depression andS.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.
Holidaytraveling canbe stressful when airports are packed, flights are delayedand winter storms scuttle the best-laid plans. Whether you’re motoringon the road or flying the not-so-friendly skies, here are some tips fortaking 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 yourpocket set to go off at dosing time.
- Don’t skip meals! Airlines barely feed anyone thesedays, so bring your own food and water. Don’t expect to find food thatmeets 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 cansay bronchitis.
- If you’re flying several hours, book ahead for a special meal, if possible.
- If you’re leaving the country, see your doctor aboutpreventive medicine and extra vaccinations for infectious diseases. Youmay also want to call the federal Centers for Disease Control andPrevention (CDC) in Atlanta at 404. 332.4555 for travel advisories orgo 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 timesand locations of meetings at your destination city before leaving home.Check the websites of groups like AA, NA and Al-anon.