The attitude of others regarding multiple medicines use
Listen to patients and health professionals talk about the reaction of other people about taking multiple medicines.
Many people we spoke to described the negative attitudes of other people towards them about the number of medicines they take. Disparaging and sometimes hurtful remarks can come from anyone: friends, family, colleagues, complete strangers and even health professionals.
Some people refer to the experience of ‘the things people say’ as the stigma of taking multiple medicines, or the conditions they are taking medicines for, or both. Other people just feel it is a bother to continually answer the same questions over and over. Most of the people we spoke to are careful who they speak to and what they say about their medicines.
Taking ‘many’ medicines
Taking ‘one or two’ medicines is rarely an issue and will go unnoticed, but the people we spoke to described receiving unwanted attention and disapproving comments from others once they were taking ‘a handful’ of medicines.
Jane was questioned about the number of medicines she took when she was just starting antidepressants and coming to terms with them.
People at work have seen Mia taking her medicines and have made jokes, especially about the eye drops which have to be taken often for a very obvious condition.
Things other people said were usually intrusive and disrespectful of privacy, rather than unkind. Other people would make assumptions about the person or be dismissive of their need for medicines. They did not realise how hurtful this could be.
Sue is less concerned about the questions people ask now compared to when she first began taking a number of medicines. It helps that people close to her know and understand her situation.
Other people’s reactions to the number of medicines Karen takes and the assumptions they make about her because of them, are among the most difficult aspects of managing a chronic condition.
Some medicines are more likely to attract criticism than others. Familiar medicines, such as inhalers for asthma, are often acceptable. However, taking a ‘handful’ of tablets may be met with shock and unwelcome questions by people who do not know or understand their purpose.
Diana found that some medicines were considered acceptable by the students when she was at school, whereas others were not.
The people we spoke to who have insulin-dependent diabetes describe receiving more negative comments and disapproving glances when insulin used to be injected with a hypodermic syringe. These days it is often delivered by a pen or pump, which is less obtrusive and does not have the ‘drug user’ connotations.
Brian was uncomfortable using an insulin pen at first, but he found that he can use it when he is in public without attracting attention.
The stigma of multiple medicines is a particular problem for the younger people we spoke to. Taking medicines regularly, particularly a number of medicines, is something that is widely considered to be inappropriate for young people and this attitude makes it difficult for young people who need them. The people we spoke to encounter this attitude among friends, family, strangers and health professionals.
One doctor Mia saw questioned her about taking one medicine ‘for the rest of her life’. Mia agreed to stop taking it for a while, but doing so made her feel unwell.
Unsupportive comments from health professionals were particularly shocking and hurtful to the people we spoke to who experienced this.
Jane was upset and humiliated when a pharmacist interrogated her about her medicines and medical history in the very public space of the pharmacy. She felt his questioning was unprofessional and inappropriate.
Receiving unsupportive feedback and a lack of understanding can have serious ramifications for the people we spoke to. Some people go to significant lengths not to take their medicines in front of other people, which can be inconvenient and makes managing their medicines even more difficult. Some of the consequences of a lack of support can have serious implications for their health, their day-to-day life, their relationships and how they felt about themselves.
Mia was frustrated when her doctor did not accept that non-pharmaceutical methods to deal with her anxiety did not work and she needed prescription medication.
Emma stopped taking one of her medicines after her father made repeated comments about the number of medicines she took. The outcome was quite good for that medicine, but it is not something she would be willing to do with other medicines.
Diana has lost contact with friends, partly because of her mental health issues and because she could not tell them about the medicines she takes.
Questions from children are often easier to deal with than questions from adults, as their curiosity is considered to be a natural part of growing up. Being confronted with questions in the workplace is particularly problematic, as medicines are a private affair that is unrelated to doing the job.
Karen could respond to her niece and nephew’s questions in a way that was satisfactory to them, but she was taken aback by the same kind of questioning by a work colleague.
Many of the people we spoke to have many years’ experience taking a number of medicines. They have learned who they can tell and who they cannot and have found ways to prevent the curiosity of others. This includes putting their medicines out of sight at home, or devising convenient ways to conceal their medicines when they are out, to avoid unnecessary probing from people they do not want to discuss their health with.
Emma does not mind close friends knowing about her medicines as much as she used to, but she prefers to keep her medicines away from people she doesn’t know well.
Diana devised ways of hiding her medicines when she was out with difficult friends.
Dealing with inappropriate comments and questions is one of the most difficult aspects of taking a number of medicines. Some people we spoke to have responses to unwelcome questions that avoid lengthy explanations and satisfy people sufficiently so they will not ask further questions.
Jane and her husband made a deliberate decision to be open about her situation with members of their immediate community. They responded with care and support.
Glenn feels his managers are the only people in his workplace that need to know about his medicines. He developed a polite, but firm, way to deflect questions from other employees.
Karen has found a standard response to any question about her medicines that works most of the time. When it does not work, she feigns vagueness.
For some people, the emotional pain and lack of support associated with taking a number of medicines is outweighed by the relief that there is something that can be done about their condition. Some of the people we spoke to feel the stigma they experience or feel about taking a number of medicines reduces over time as they gain more experience managing and living with their medicines.
Sue will often deflect people’s questions with a light-hearted response. At other times she actually finds it helpful to talk about medicines with someone new.
It was initially difficult for Glenn to be ‘labelled’ with the conditions he has. But they are now a part of his life and they need to be managed, even if that means other people feel uncomfortable.
What people also talk about
The Living with multiple medicines project was developed in collaboration with
