Disclosure: How to Deal With the Micromanagers in Your Life

Do you have people in your life that, the day you told them about your diagnosis, started relating to you as if you had HIV tattooed on your forehead? Here’s what a client said: 

 “I recently told a couple of friends about the HIV thing. The next day, I started getting bombarded with email messages. This diet. That motivational article. And panicked phone calls every time I sneeze. They're trying to micromanage me. I’m starting to regret my decision to disclose.” 

There are people in your life who are going to take your HIV in stride, and relate to you as they always have though, at least initially, with a little too much concern about how you are feeling physically and emotionally. Often this is temporary, and just requires some patience and reassurance on your part as they adjust to the news.    

And then there are those people who for some reason, can’t seem to move past your diagnosis. As a result, they start acting like you appointed them your personal health coach. 

There are a lot of reasons why other people behave this way. Their concern can be the result of feeling like they need to fix you or take care of you — even if you didn’t ask them to — and they’re not sure how to do it. Trying to tell you what you should be eating. Drilling you on whether you are getting enough rest. Interrogating you on your latest lab results. Most likely, they want to help and they feel helpless. They may try to make their own helplessness go away by trying to manage your life. 

This can leave you feeling disempowered, as if you are only about your diagnosis, and everything you do or say is somehow connected to HIV. 

So what can you do? Maintain your control, for one thing. Here’s how:    

Be a role model. Yes, your friends and family are keeping an eye on you. You can show them that you are dealing with your diagnosis by taking good care of yourself. For example, having an optimistic attitude and staying compliant with treatment may help to reassure them that you are managing just fine. Actions speak louder than words, as they say. 

Try some “patient” education. Encourage them to ask you questions. Give them information that you think they can understand and that will give them a sense of what living with HIV is like. You might want to offer answers to the questions that you suspect they have but are afraid to ask. 

Look for teachable moments. If someone in your life treats you as if you can’t take care of yourself — or says or does something that shows lack of understanding or insensitivity — use that moment to gently let them know how their behavior makes you feel. Don’t wait until later. Some humor can help. Try this: “My name is still ___________. I didn’t change it to HIV” (and then smile).    

And don’t forget to take care of yourself:

Be your authentic self. When things don’t feel all that fabulous, don’t pressure yourself to pretend otherwise. Let the people you are closest to know when you are having one of those days that we all have from time to time, when the challenges of life, including but not limited to living with HIV, are just plain frustrating. And then let them be there for you, as they have been in the past. 

Be gentle, but firm. Being micromanaged can leave you feeling disempowered. Set limits by letting people know that you are taking responsibility for your health, that you appreciate their concern, and that you will let them know if you need their help. Some may need to hear this more than once before it sinks in. Repeat as needed. Patience can go a long way here.   

Let the worriers know you are in charge of your health. And then take charge!