Mitochondrial disease and the impacts on mental health

1. Mitochondrial disease and the impacts on mental health Shelley Beverley Registered Psychologist (AHPRA)

2. About me • Professional background • Personal journey

3. You are all on your own individual journeys and some of this information may not apply to you at this point in time. Take away what you feel is relevant. It is important to remember that we are likely to experience varying symptoms and won’t know exactly what another person is experiencing. However, we can still support each other and relate to some of the challenges and emotions that we all experience at some point in this journey.

4. Emotions and processes • Mito impacts almost every aspect of our lives: • Relationships • Finances • Employment • Social engagement • Levels of activity • Capacity (mental and physical) • Coming to terms with life never being the same again • Denial, guilt, anger, sadness, frustration, grief, fear, feeling overwhelmed, happiness, paranoia, anxiety, depression • Others making ill-informed comments such as ‘I understand’ or ‘I know how you feel’ – often not thinking about the impact mito has on you • ‘Being different’ – not being able to eat with others, having to treat yourself privately e.g. insulin injections, catheter, hearing, wheelchair access, mobility

6. Anxiety and Depression • PEEK study • 42% of respondents report suffering from anxiety and sleep issues • 41% report experiencing depression • MORE THAN DOUBLE THE NATIONAL AVERAGE • Anxiety = continuous feelings of stress and worry, hard to cope with daily life, not easy to control = result of our interactions with our environments • Depression = low mood that affects how you feel about yourself, loss of motivation, interest, energy, sleep, concentration • Increases risk of heart disease, strokes, diabetes • Makes it more difficult to find the energy and motivation to eat, exercise, take medication regularly

7. Anxiety and Depression • Remind yourself of what is attributed to your physical health – sometimes everything overwhelms us and becomes hard to differentiate • Most often, it is because of the impacts of mito, that we experience anxiety and depression (lifestyle changes, pain, disruption) • Treatment = address it! Talking and emotional support, professional support • Avoidance – can get in the way of physical treatment success • Specialist support can change thinking patterns and unhelpful thoughts, develop coping skills, support recovery • Alert your doctor if you feel that medication may be impacting your mood

8. Things to remember • There is no time limit to our emotions • There is no step-by-step process to follow • Unexpected challenges present themselves constantly • Your emotional well-being is just as important as your physical well-being – make time for this • Mito is multi-layered – be conscious of the many levels in which you can be impacted and know that you have been faced with challenges many others have never had to deal with • Be kind to yourself (you need more energy than most to fight a disease that depletes energy faster than normal!

9. Emotional challenges • Our own diagnosis • Continuous anniversaries of deaths, birthdays of lost ones • Life changes • Where do you go when you’ve hit rock bottom?? • Constant reminders of what we can no longer physically do • Loss of a loved one to the disease • Constant accommodations • Our bodies ‘letting us down’ • Fear of the future • Sadness and anger at the life ‘we could’ve had’ • Knock after knock • Reduced ability to do what we want to do • Changes in roles e.g. family, work, friendships

10. Types of support Getting support – GP, disability providers, advocacy services, social media • Counselling – individual and family, financial, grief and loss, fertility, employment • Psychology –CBT (Cognitive behaviour therapy), IPT (Interpersonal therapy) • Psychiatry • GP: Mental Health Plans, Chronic Health Plans (still have to pay a gap fee) • Beyondblue, Lifeline, Relationships Australia • Finding a suitable counsellor/psychologist might take time, you HAVE TO find a good fit and feel comfortable. Sometimes it will take several attempts before you find someone you can connect with (just like any doctor/specialist) – don’t give up! It is your mental health, not theirs.

11. Other types of support • Advocacy • Centrelink benefits • Employment assistance (DES, JiJ) • Job Access – modifications and assistive devices in the workplace to maintain work • Food vouchers • NDIS: • Domestic cleaning • Behaviour support • Counselling/therapy • AHP support – OT, speech • Physiotherapy • Auslan • Assistive technology e.g. smoke alarms, communication devices, door bell alerts

12. Health considerations and proactive approach • Gastrointestinal • Cardiological • Endocrine • Neurological • Hearing and vison tests • Neurospychological • MRI and MRS • Blood tests to check lactate, diabetes, creatine etc • Advantages: • Establishes a baseline of symptoms • Monitors and provides evidence of progression of the disease and allows for adjustments in treatment or preventive approaches

13. Coping strategies • Modifying your environment (OT support and NDIS funding) • External memory aids e.g. calendars, phone reminders, to-do lists • Organising tools e.g. pill boxes, webster packs, ordering bulk and arranging monthly • Use of diaries/journals • Engaging in favoured activities – low level energy output e.g. puzzles, yoga, TV programs • Surround yourself with preferred people (supportive, positive) or animals • Know your limits • There is no payoff in doing it alone – use your resources, educate yourself on what is out there to support you • People around you want to help! They just don’t know how – guide them • Involve family in appointments – enables them to hear information directly from a professional • Have an emergency protocol in the event that you are admitted to hospital unexpectedly • Ensure you have a medic alert bracelet/accessory as well as saving your medical information on your emergency ID on your phone

14. Coping strategies • Mindfulness – being present in the moment - maintaining a moment-by-moment awareness of our thoughts, feelings, bodily sensations • Breathing • Counselling – talk! • Journal entries • Catching up with friends/family • Social media support groups, mito connect calls, mito info days, mito conferences • Remind yourself that IT’S OK not to feel OK – the struggles are real and hard • Remind yourself of how strong you have been to get through to where you are • Don’t give time to guilt – you didn’t ask for this disease!! It wasn’t a choice

16. Coping strategies • Education – both for yourself and your support network • Use tools to educate your doctors e.g. UK Newcastle guidelines, CPD online training, mito foundation resources, GP booklet, Mitochondrial Medicine Society Patient Care Standards etc. • Don’t let yourself become overwhelmed with information • Ask questions! You deserve answers and honesty to better prepare and manage mito • Challenge medical views if your gut instinct says – get second opinions • Always remember what you CAN control – let go of what you cant • First and foremost – focus on recovery when you take a knock – everything else can and has to wait – use those resources! This will payoff in the long term

18. Importance of talking and emotional well-being • Always have hope – keep fighting • Vent! Let it out – have a good cry! • Sometimes there is nothing that can be said but it helps to offload and have someone there • Make the most of what you have – don’t have regrets – time is so precious – especially with people with mito (say the things you need to say, do the things you want) • Share the load • Rationalise – reflect • Coping skills to change irrational/unhelpful thinking • Counsellors/psychs are (should be!) patient, objective, non-judgmental • When our minds are so overwhelmed with the pressures, stressors, challenges, emotions – we often just need someone to make sense of it for us

19. Carers of people with mito • Be patient • Be available and present – you don’t need to have the answers, just validate • Look after yourself – eat well, exercise, make time for your own activities, respite • Have no regrets – say what you need to say, do what you need to do • Make use of other services for support – try to maintain your role as best as possible (partner, parent, daughter/son, friend) • Try to be conscious of your interactions and be considerate of daily challenges for the person • Talk to the person you are caring for – be honest about where you are at on this journey without blame or guilt • No one has chosen this disease and life for themselves – work through the perceived guilt, sadness, blame – there is no space or time for us to carry negativity with mito (this is often best done in a controlled family counselling setting)