Adjusting to the impact of multiple medicines
Listen to patients and health professionals talk about the impact of getting used to living with multiple medicines.
Some people find that taking multiple medicines has such a minimal impact on their day-to-day life that they ‘hardly think about them’ and do not have to change their existing daily routines. Other people find that there is an adjustment period that takes time and can be challenging.
‘Getting used to the idea’ of taking multiple medicines
For many people this is mainly about getting used to the idea of taking ‘so many’ medicines—becoming accustomed to the idea of being dependent on medicines for the rest of their life was difficult to do when they first started taking medicines, or when the number of medicines they took increased.
A number of people describe initially finding medicines an intrusion in their life. One person describes having to adjust her thinking from ‘People don’t take these’ to ‘This is what is going to keep me well’; others discuss changing their mindset from hoping or expecting that they will not have to take them forever to asking themselves ‘How well am I on them?’
Niall needed time to get used to the idea of having to take medicines for the rest of his life, particularly given his inclination to avoid doctors, an inclination that is shared by many men.
Karen lost self-confidence and would ask colleagues to check that what she had written for her thesis had not been affected by the medicines she was taking.
Adapting day-to-day life
Some people have needed to adapt aspects of their life and usual daily routine to meet the needs of their medication. This includes things like changes to diet to manage constipation, one of the most common side effects experienced. Other people have needed to change their usual mealtimes and eat at times they normally would not because of the need to take certain medication with food.
Glenn had reduced his salt intake because of his family history of heart conditions. He was then prescribed lithium and had to reintroduce salt into his diet, which he found challenging.
Sue is sometimes unsure how to adapt certain routines to accommodate her medicines, which can be frustrating.
Helen has had to make some changes to her daily routine that are less than desirable.
Emma has made a number of changes to her routines of showering, eating and dressing.
Adapting to loss of freedom, independence and capacity
A certain loss of independence and freedom comes with medicines for some people; however, they have often found ways to adapt to this and are content to compromise for the sake of feeling well. Some people are still in the process of learning how to accommodate their medicines in this way. Many people speak about their wish to stop or reduce their medicines in the future.
Phoebe drives less now that she takes four tablets that may affect driving.
Gordon is hoping to reduce his medicines at some point, so that he can do things around the house like he used to do.
Diana is resentful of her medicines because of what they are doing to her and her life at such a young age.
A number of people we spoke to, including all of those in their 20s and 30s, describe losing the capacity to be spontaneous due to the need to take their medication. They have to weigh up the benefit of taking their medication with spending unplanned-for time with friends or family and taking up last-minute opportunities as they arise. They often resent being ‘tied’ to their medicines, particularly if they are young.
Micaela feels that she can’t be spontaneous in the way that other people in their 30s can be, because of her medicines.
Karen’s medicines limit unplanned overnight stays. She does, however, sometimes use this to her advantage.
Adapting to side effects
Juggling the capacity to do things with the need to take medication that causes side effects is a challenge for some people. Sleep can be affected by medication or by pain, which can dictate how people spend their waking hours. This is particularly the case for those who are employed and need to consider how their medication will fit with their working hours and also the potential impact on the quality of their work. One participant retired early because of the impact of her condition and the side effects of her medicines; she found that she needed the whole weekend just to recover from work, only to ‘do it all again’ the following week.
Karen has had many challenges finding medication that manages her pain adequately enough to enable her to sleep. She reduced her work hours to allow for this.
Emma has been able to take a flexible approach to her work days and hours, which has been a big help.
Impact on personal relationships
Few people spoke about the impact of their medicines on their personal relationships. Many people said this was not a problem for them in terms of their medicines, although for others their condition has had a problematic impact on their relationships and sex life. It is known that some medicines have side effects that can affect libido and sexual functioning.
Gordon finds that his medication has had an unwanted and negative impact on his libido and sexual performance.
Positive outcomes that help people to adjust
Some people experienced many trips to the hospital emergency department before they were prescribed effective medication. Avoiding medical emergencies is thus a tremendous outcome for them.
Jan used to contract lung infections regularly due to her condition and sometimes needed to be hospitalised. She has since learned to manage her condition to prevent infections becoming more serious.
Helen credits Seretide with allowing her to be more active and to avoid hospital visits.
Advances in medical technology that have changed the way medicines are administered have made an enormous difference for some people.
Peter S used to use hypodermic syringes to inject animal-based insulin. Now he uses an insulin pump containing human-based insulin, which is far more convenient.
Some people we spoke to would dearly love to have their old life back, before they needed to take multiple medicines. This is particularly true for people who live with chronic pain. They are nonetheless able to report examples of where there has been a positive outcome that was unexpected and thus most welcome.
Everyone we spoke to describes the positive impact that their medication has had on their life, even though it may have taken some time for them to realise the benefits. Sometimes it was to do with symptom control or their capacity to do things; other times the positive impact of their medicines had nothing to do with their health, such as getting a dog because they were home more often. The most important impact is that they feel well, they are alive and they can function normally. This is a great help to them in coming to terms with taking multiple medicines.
Lyn has been able to maintain an active social life and increase her voluntary work because of her medicines.
Before Glenn and his doctors found the medication that manages his bipolar disorder, he could not socialise. Now he can lead a normal life.
What people also talk about
The Living with multiple medicines project was developed in collaboration with
