Last week, Sunday Vision published the story of Jackie Negesa and Boniface Okello. Negesa lost Okello to kidney failure, but what hurt her the most was the fact that Okello and his friends kept the condition of his health a secret for four years. It is based on this that Elizabeth Namazzi investigates why people keep their medical histories a secret. 

When Jackie’s husband died last year, she learnt that he had been diagnosed with kidney failure but had lied to her about his condition. “All he said was that he had high blood pressure so he was going to die anytime,” she says. One cannot help wondering why he just didn’t come out with the truth about his illness. Did he really have to lie about it? Why would he even lie about it? 

According to Betty Akurut, a counsellor and lecturer at Uganda Christian University, Mukono, one can lie about one’s health to protect their spouse. “They fear that revealing such information will break you down so they want to save you from the pain, stress and anxiety of knowing that they are going to die,” she says. 

This may sound valid to the sick spouse but is it fair to the other party? “No way,” Grace, a lawyer in Kampala says with emotion. “Who says I want to be saved from ‘all that pain?’ If I love you, I want to share ‘that pain and stress’. That is what (the marriage vows) ‘in sickness and in health means’,” she reasons. 

Lydia, a journalist, agrees with Grace. “People die; that’s normal, so tell me so I can say goodbye. How do you die on me without telling me that you are dying? That is going behind someone’s back. Whatever reason one may have for hiding it from me, I don’t care because it is selfish. If you know you are going to die, give me a chance to say goodbye to you instead of thinking for me,” she says. 

Why lie and hide?
Unfortunately, it is not unusual for couples to keep such information from their spouses. How many times have you had a headache and not breathed a word to your spouse? Agnes recalls the day her husband had malaria and she was the last person to know. 

“A mutual friend at his office called to ask me why I had let him go to work when he was in such bad shape. I had no idea what he was talking about until he drove him home in the evening. Apparently, my husband was too weak to even drive back home!” Agnes recalls.

We have heard stories of spouses who go for HIV/AIDS tests, find out they are positive and say nothing about it when they return home. In such cases, the sick spouse dreads the accusations and counter-accusations that are likely to ensue, especially when the other spouse is HIV negative. 

In other cases, it is just a case of upbringing. Men, for instance, are brought up with the belief that they are not supposed to whine about minor discomforts and pains, so they are not likely to call their wives about a minor headache or a broken finger. “Men are brought up with the belief that they have to be strong so when he gets such news, his first thought is ‘I have to be a man’,” Peter says. Besides, Charles argues, women worry easily so men feel they don’t have to tell them about simple illnesses. 

That is not to say women do not lie or hide crucial information about their health. Maria, an HIV-positive mother of three, says she hid her HIV status from her husband for close to three years. “I just didn’t know how to break the news,” she says. “For one, I didn’t want him to know that I had cheated on him. Secondly, I feared that he would leave me once he found out,” she says. 

And her fears of separation were not unfounded. During her counselling career, Akurut has counselled terminally ill people who feared to disclose the truth to their spouses for fear that they would quit the marriage. One, she says, had a few years to live but refused to tell his wife. “They ask questions like how will my family take this? How will they deal with the fact that I have a few years to live? So they just keep quiet instead of risking to end their marriages or worry their family members,” she says. 

A need to share
Ideally, one should tell one’s spouse about any illness, terminal or not. “There should be open communication because spouses should be able to disclose everything to each other. Talking about seemingly unserious issues brings you together while not opening up builds walls between you. You think your issues are your issues and start thinking that you don’t need each other,” Akurut says.

When to break the news
Learning that you have a terminal illness is one thing, breaking it to your spouse is another. Both are not easy to deal with. Akurut counsells that one should get over the shock and get emotionally stable before breaking the news. 

Question is, how exactly do you tell a spouse that you are about to die?
The answer, Akurut says, is to prepare them in advance. “Book an appointment with them and tell them that you have something important to share. They will wonder if it is good or bad news and that in itself is preparation. When you meet, don’t drop the bomb immediately. Start by telling them about your health. Prepare them for the worst by asking questions. For instance, do you remember when I was unable to work? Do you remember when I had a bad cough? That prepares them for the worst,” she counsells. With such preparation, breaking the news will be much easier so you don’t have to carry the burden on your shoulders.