We speak to Maria Mullan, one of the clinical psychologists behind the Better Together courses and webinars.
Sometimes the mental challenges of living with Fanconi Anaemia and other rare conditions outweigh the physical ones and while stoically holding down the fort has its place, so too does finding connection with others and developing coping skills.
Since last year, we’ve been offering online courses and webinars aimed at doing exactly this as part of the Better Together for Healthy Bone Marrow, an initiative shared with 5 other charities and funded by the National Lottery.
Aimed at both those living with the conditions and their families, the courses and webinars cover areas such as managing stress and uncertainty, mindfulness, well-being for carers and planning for the future.
We chatted with Clinical Psychologist Maria Mullan, who facilitates two online courses: Managing Stress and Uncertainty and Moving Forward: Living a life that matters to you.
“It’s all about helping the participants to navigate life well with a health condition,” Maria tells us, “It starts with normalizing that this is really difficult and there is lots of other life stuff going on as you’re dealing with your condition, so we work on life skills honed to this reality.”
“There’s often lots of challenging cognitive stuff going on, maybe thinking about the future, maybe reflecting on the past, which can really take you away from the present moment. So, it’s helping people to connect with the here and now and find ways to navigate those difficult inner experiences to connect with what matters.” Maria tells us.
It’s also about peer connection; the sessions are held live online with a group of up to 12 participants living with similar conditions. “Participants have told me how special it is to be part of a group that ‘just gets it’ from the beginning.” Maria says.
The courses are an informal online space where sharing is encouraged but not essential. “We design them to the develop skills to deal with uncomfortable feelings and uncertainty.” Maria comments, “it’s a great space to consolidate existing helpful coping strategies and develop new tools and skills to support you along the way”
After each session participants receive an e-mail with the presentation and a collection of worksheets and resources to help them apply what they’ve learnt. They are also part of a WhatsApp group where participants can continue to connect and share experiences of putting the skills into practice.”
Managing Stress and Uncertainty
The Managing Stress and Uncertainty course lasts several weeks and is open to people living with FA (and other conditions) and members of their families. “It’s a lot about effectively taking care of yourself in the moment” Maria says noting that the courses draw on elements of Mindfulness, Self Compassion and Acceptance and Commitment Therapy.
“We try to help people to notice what is present for them in the moment then use tools to respond in ways that add richness and meaning to their life.” She tells us. “We know there will be moments of intense stress around diagnosis and transplant, but also in terms of work and relationship issues, it’s about preparing for them as best we can.”
Moving Forward: Living a life that matters to you
The session on Moving Forward: Living a life that matters to you is focused specifically towards adults living with FA and other conditions who are dealing with life post-diagnosis and treatment. “It can be incredibly hard to navigate the side-effects of the condition or treatment and get back to meaningful activity. Maria says, “The course is about helping people to reflect on what’s important to them now and using the learned skills to get back to what matters, or try something new”.
“The course focuses on elements of self-identity and values to help participants move forward” Maria says. “Fatigue can sometimes be a barrier to doing what they’d like to do and our work can help people to prioritise their energy towards the things that matter to them.”
“I’m here to help find the moments of joy and richness” Maria says with a dedication developed over the past 6 years focused on working with people with physical health issues. “A few participants have approached me at the end of the course saying they almost didn’t sign up because it didn’t seem like the right time, but how glad they were that they had.”
If you would like to take advantage of this incredible resource, the next courses coming up are shown on the Super Rare website: