Recently someone very close to me had surgery for a health issue not related to HIV. She had the surgery, went home, began to recover for a days, went to the mall, and then suddenly had a fever and post-operative infection and had to be re-admitted to the hospital for a long course of intravenous antibiotics. This kind of setback made me think about the roller-coaster ride that can be our health status, physically and emotionally, as people living with HIV.
There seems to be two aspects of taking care of ourselves when we meet an obstacle, such as an acute illness, an opportunistic infection, a treatment complication, or even a new medication side-effect. There is the physical side, which requires our noticing the symptoms, reporting them to our doctor, receiving assessment and diagnosis, collaborating on the design of a treatment plan, and finally implementing the treatment plan until our symptoms hopefully are reduced or eliminated. But there is also the psychological side. Our confidence in our health can be shattered very quickly with the onset of sudden symptoms, challenging our optimistic and positive outlook. But it is at this time of challenge when we must put extra effort into maintaining that positive outlook – it’s easy to be optimistic when times are good; what is valorous is being optimistic when times are bad.
In my friend’s case, she was on top of the world the day she got back to the mall. It represented a return to “real life” after days in the hospital. Even the simple acts of riding in a car, eating solid food, and walking among the throngs of shoppers symbolized health and vitality, and having a quick reversal back to the boring hospital bed was symbolic of “moving backwards”. In her case, she had to cope mentally by acknowledging her loss, which is that the setback infection frankly sucks. But then, she accepted that the additional treatment of the new complication is also a form of moving forward; every contact with the doctor, every night of hospital-protected rest, every dose of antibiotic moves her forward in life as if she were walking the corridors of the mall from one store to another. So is the case in HIV; receiving treatment for an acute complication leads us down the road toward better HIV management in the long run. While it’s true for some that the road of complications leads to inevitable decline or even death, receiving good treatment and fighting the good fight lessens the odds that the complication will be serious or fatal. So does keeping a positive outlook.
Rebounding from an opportunistic infection or other health complication requires expert technical assistance from everyone from your doctor, to the nurses in the hospital or office, to the pharmacist who gets you new medications, to the members of your personal social support system, to your therapist (who might have to make a hospital or house call). But all these “king’s men” putting you back together again, Mr. or Miss Dumpty, can be aided by you if you have a determination to regain your energy, maintain the positive spirit of your innermost self, and strengthen your determination to recover. It’s not enough to say, “I want my life back,” you have to make it happen, even if that only means staying optimistic and adhering to your medical regimen until you’ve recovered.
If you’re experiencing a setback currently, try to keep in contact with some of the things that represent “normal” life to you. That might be hard, because you’re in the hospital, in a convalescent center, incarcerated, or staying with someone where you don’t normally live, but some things in your routine might still apply. Is there a TV show you normally watch when you’re healthy that you could watch now? Someone you routinely call on the phone to chat? A magazine or newspaper that you usually keep up with? A food that you can still eat, if you’re not on a restricted diet? What about “fooling around” with your significant other – how much will your body allow of that right now? Try to find something “normal” in your life, even if it is looking up and recognizing that the sky is still blue, the sun is still bright, and the moon is still full no matter where you are in the world. Keeping a positive outlook in your mind will be a good example for all of your bodily systems to follow during the healing process. And think of the money you’ll save by putting off going to the mall until next month!