Concealing an Illness – Stigma, Shame or Privacy Right?

Written by Ekaette Udoekong

The disclosure of one’s health status comes with a lot of sensitivity. There are various factors to consider, such as confidentiality and the right to privacy. It is not enough to dwell on good intentions and invade another’s right to privacy. Although informed consent is sought prior to the treatment of some illnesses, situations arise in which some of these ethics are ignored.

In February 2017, a close friend passed away. He was young but ill, very ill. Nobody, not even family members or friends, knew what he was suffering from. At first, he was aggressive when he was asked to seek medical attention and adamantly refused to talk of any sickness even when it was obvious his health was deteriorating. What is the phobia of hospital called? Nosocomephobia! This might not have been Michael’s reason for refusing to seek medical attention. May be it was shame or stigma but Michael was not even diagnosed of any condition because he did not accept that he was sick. Or maybe he had the right not to go to the hospital because it was his life and could deal with it his way!  

There are a number of reasons why people do not disclose their health status. The most popular among them is stigma, pity, anxiety and concerns of family and close friends. Strangely, Michael might have had the right not to disclose his status to anyone but what if he had a communicable disease (depending on form of transmission) that needed him to be isolated and treated, do we, his family and friends not have a right to be disease free? 

I remember telling Michael that he needed the help of a Psychiatrist or a Counsellor. He responded calmly that he was not sick and he definitely did not have a mental health disorder. Months past, family and friends watched Michael go out and come in, gradually losing weight. Later on, he could not even leave his bed and perhaps the time came that he thought was appropriate to seek medical attention - only then did he agree to be taken to a hospital. The Doctor said he was physically sick and was also very depressed because of what he suffered from.  In situations such as these, how could family member manage his refusal to seek medical help? Should rights be considered first when handling health status disclosures or offering care to the sick? For us at Gede, we work to lessen the suffering of individuals/communities that are underserved and stigmatized because of their health conditions, and this calls for action within the civil society organization especially those providing health services,  to integrate elements of mental health to their overall service delivery. This may not have saved Michael but it may help someone else who is in a similar situation.