Chronic illnesses can impact anyone, the secret is to manage yours. And to do that you need some specific skills. The people who are the most successful at managing their disease often do so by thinking of their illness as a journey or a hike down a path.
The key to a successful journey (or any undertaking) is, first, deciding what you want to do; second, deciding how you are going to do it; and, finally, learning a set of skills and practicing them until they have been mastered. Success in managing a chronic disease like HIV follows the same steps. Here are the top four skills you'll need in confronting your HIV; mastering them will help you traverse all the roads ahead in your life:
1. The ability to do new things: Like any illness, HIV requires you to do new things, including sticking to a medication schedule, monitoring new symptoms, and dealing with side effects. You'll need more frequent interactions with your doctor and the health care system. Sometimes you'll need to adopt a new exercise or a diet. All of these constitute the work you must do to successfully manage your illness.
2. The ability to continue your normal life. Just because you have HIV doesn’t mean that life stops. There are still chores to do, friends to keep up with, jobs to perform, and family relationships to maintain. Sure, things you once took for granted may become more complicated in the face of HIV, but you don't need to give them up. In fact to stay healthy, you need to maintain these aspects your life. You just may need to learn some new skills or adapt the way you do things in order to maintain the lifestyle you're familiar with.
3. The ability to deal with emotions. When you are diagnosed with HIV your future changes, and with this comes changes in plans and feelings. You may experience powerful negative emotions you haven’t felt before, like anger, fear, depression, frustration or isolation. These feelings are a normal part of coming to terns with the impact a chronic illness can have on your life. This is where the path can get rocky. To negotiate the rugged terrain you need to work through these difficult emotions. You can't go this part alone: which brings us to the next skill.
4. The ability to reach out. Managing your HIV is like climbining Mt. Everest — it's not something you should attempt alone. Yet a frequent response to being diagnosed with HIV is the instinct to hide. The disease still carries a powerful stigma that you will have to fight in order to live a normal life. Feelings of shame and guilt are also common. But, no matter what you've done, HIV is not your fault and you don't deserve to be sick. HIV is not punishment, it's just an infectious disease. You still deserve to have happiness and intimate relationships. So fight the urge to cocoon. and push yourself to develop the skills to reach out to others, so you can locate and use community resources, talk about your illness with family and friends and keep — even if you have to adapt — your social activities. Connecting with others who have HIV through support groups, online forums or phone calls is crucial to keeping your spirits up and your immune system humming.
Like any trail, your illness changes over time. As you travel along, what started out as a rocky road can smooth out — or vice versa. To negotiate the ups and downs of the trail, you have to have different srategies: sometimes you can go fast, other times you have to slow down because there are obstacles to overcome. But with these four skills you know you'll be able to face what ever comes around the bend.
Allison Webel is the lead author of Living a Healthy Life with HIV, an Assistant Professor of Nursing at Case Western Reserve University in Cleveland, Ohio, and a part of the Stanford Patient Education Research Center.