Thousands of hearts around the world broke at the news of Professor James Malone-Lee’s passing in the early hours of Saturday morning after a short illness forced his retirement from researching urinary tract infections (UTI) and treating patients.
People experiencing chronic pain and illness, like chronic urinary tract infection (UTI), often find their condition has as equally devastating an impact on their mental health as it does on their physical health and well-being. In a society which overwhelmingly focuses on health and ‘good’ health behaviour—you go to the doctor, follow their instructions, and get better—the impacts of having a chronic health condition are often completely unexpected, and rarely discussed. It is not unusual for the resources and strategies people previously used to cope with everyday life stressors to rapidly become overwhelmed, leaving people feeling lost, helpless, and hopeless. We tend not to talk about how experiencing a significant health condition increases people's vulnerability. Unfortunately, additional features associated with chronic pain and illness are loss and grief. When someone is chronically ill, they can be at risk of loss of employment, important relationships, and secure housing. They may also experience less tangible losses, such as a loss of identity, and of their hope and dreams for the future. In the struggle to ‘get better’, many patients are inadvertently traumatised, either through the struggle for an accurate diagnosis, through invasive and painful treatments, or through the implication that they may somehow be responsible for causing their condition. Is it any wonder then, that anxiety and depression are increasingly experienced by people with chronic UTI? We feel it is just as important for people to know about the mental health impacts of chronic pain and illness as it is to know about the physical impacts, and to be able to recognise when their physical ill-health is impacting their mental well-being so they can seek appropriate help. The following article has been written by people who understand chronic UTI and the impact it can have on your mental health. We hope you find it helpful.
Please Note: Although we hope this is not the case, if reading this article induces negative thoughts relating to your health condition, we encourage you to seek support from family, friends, a trusted health professional or other familiar supports. If you are in crisis, please contact Lifeline on 13 11 14, Beyond Blue on 1300 22 4636, the national Suicide Callback Service on tel:1300659467 or the relevant mental health support organisation in your country.
Chronic UTI Australia will shortly launch ‘Hearing Patient Voices’—a confidential online survey of people who have been diagnosed with a chronic urinary tract infection (UTI) or who suspect they have a chronic UTI. The survey is designed to capture the quality of life impacts of the condition on various domains of life and is open to people from all countries. Participating in this survey will strengthen our understanding of patients' experiences and contribute greatly to our work in raising awareness and recognition of chronic UTI among health professionals and policy makers. Read more about the 'Hearing Patient Voices' survey here.
The festive season is usually a time for love, happiness, fun, family, friends and food. When it comes to someone with a chronic UTI, it can also be the season for unwelcome UTI flare-ups. Flares occur when bacteria embedded in the bladder wall become active (planktonic) and start to multiply in the urine, resulting in increased symptoms. Flare-ups can be triggered by a variety of things—the most commonly reported being stress (good and bad), sex, vigorous exercise, internal gynaecological procedures, bowel movements, drinking alcohol and consuming certain foods that individuals are sensitive to. Christmastime should be added to the list because it seems to be an extremely common time to experience flares, no matter where you live in the world. To help minimise the risk of a flare-up ruining your holidays, we asked people with chronic UTI to share their best prevention tips. This is what they told us.