A new digital tool aims to help people with multiple sclerosis (MS) deal with the emotional burden of their diagnosis, guiding them to focus on what matters most in their lives rather than the pain of living with MS.
It builds on prior research showing that living with MS poses many emotional challenges to patients, particularly at the time they are diagnosed and start treatment, and that the number of patients speaking of such mental health challenges as anxiety and depression has been rising over the years.
A recent survey by the MS Trust found a majority of patients struggle with emotional well-being after MS becomes a part of their lives, and that nearly three-quarters of respondents feel anxious or depressed more days several days each month. Yet, 78% were never offered mental health support to deal with their emotions.
“It is deeply concerning that so many people affected by MS are not receiving the emotional support they need,” David Martin, chief executive at the MS Trust and vice chair of the Neurological Alliance, said in a press release.
“Living with a long-term condition like MS does not only mean facing physical challenges, it can mean overcoming mental challenges too, and we believe it is absolutely vital that the support and information is out there to help people with MS, and loved-ones, who are struggling with their mental health,” Martin added.
In times of COVID-19, during which levels of fear, anxiety, and depressive symptoms have risen dramatically across the general population, it is even more important that issues of mental well-being are properly addressed in people with MS.
ACT MySelf was designed to provide mental health support to patients, but may also ease the burden on mental health services and MS nurses during a time of increased pressure on healthcare professionals.
The self-help tool uses exercises based on acceptance and commitment therapy (ACT), which uses some of the same principles as mindfulness and cognitive behavioral therapy. It is designed to help patients acknowledge and become more aware of their thoughts and feelings, and to have a clear idea of the helpful and unhelpful ways they deal with emotional distress.
Ultimately, the goal is that patients learn how to live more in the present and to focus on the things most important to them, despite all the stresses related to their condition.
“Struggling with your emotions can stop you from focusing on what really matters. Try to let them be part of your life. By making room for your emotions instead of struggling with them, you can spend your time and energy on the things that matter to you,” the ACT MySelf’s website reads.
“Think about making room as ‘I am feeling anxious and I’m going to visit my friend’ rather than ‘I would go and visit my friend but I’m feeling anxious,'” it continues. “The emotions will still be there but you’re just not fighting against them.”
An opening chapter helps patients to get to know their emotions, then moves to helping them learn to make room for such emotions and live more in the present. Chapter three deals with connecting with what matters most.
The final chapter offers an ACT Plan tailored to each patient based on their answers to previous exercises.
“There is often limited resource within MS services dedicated to psychological or emotional support,” said Carolyn Patterson, a clinical psychologist involved in developing ACT MySelf.
“We developed the ACT MySelf tool to help address this, as a widely available tool for those who do not require specialist intervention,” Patterson added. “It’s an easy-to-use resource, incorporating simple exercises that those living with MS may benefit from to help them live a valued life.”
The tool includes a series of exercises lasting up to five minutes each, and patients can both repeat these exercises as often as they like or stop them whenever they want.
“We believe that digital tools like ACT MySelf … can play an important part in putting support into the hands of people affected by MS where and when they need it,” said Alexandra Handrich, Biogen vice president, managing director U.K. and Ireland.
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