Wellcome Trust Centre For Mitochondrial Research

Coronavirus: Easing of Restrictions

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Coronavirus: latest psychology update for patients and families with mitochondrial disease following the easing of restrictions on 19th July 2021.

We are writing this update in response to the planned easing of national restrictions on July 19th 2021. We have already heard from many people with mitochondrial disease and their families that this feels like an extremely uncertain and anxiety provoking time, prompting many questions about how as a community we adjust to these changes. The aim of this brief update is to recognise some of the emotions you may be feeling during this transition and suggesting some ways of reducing the impact in the short-term.

How might you be feeling? What might help?

Anxious

You may be experiencing increased feelings of anxiety, panic or feeling afraid as if something bad might happen. This might be about the increased rates of infection, the vaccine or how both of these factors might affect your mitochondrial care. It’s important to note that you are not alone with these feelings. Some things that might be helpful:

  • Continue to recognise all of the things you and your community are doing to keep safe and well; this includes practicing good hand hygiene, wearing PPE and making decisions about where to visit and at what time.
  • Notice that social situations may feel more intense the first time we try them, but this feeling fades as we practice and get more experience. It has been a long 16-18 months of increased isolation, so it will take time to adjust to these changes.
  • Try and monitor your energy levels and pace yourself; the increased hypervigilance you feel, as well as the intensity of possible emotions is likely to make you feel more tired and exhausted. Try and get a balance if you can.
  • Take it one day at a time – focus on what you can control

Angry or frustrated

You may feel anger or frustration at people with different views to you, or if you feel the rules should be different depending on your particular views. It may also be that people do not understand the potential risks for people living with long term health conditions. Many people in the wider mitochondrial community share these concerns and some of these suggestions might be helpful:

  • As above, notice how anger pulls you away from focussing on your needs and the people around you. Even though these emotions are normal, it’s important to remind yourself that being pulled into these feelings takes you away from other, more adaptive experiences e.g. connecting with family, your partner or your interests or hobbies
  • Notice how anger feels in your body and mind and try to engage in an activity that helps you defuse from these feelings. These activities are different for everyone, but some examples include exercise, games or watching TV / listening to your favourite music

Stressed or unprepared

You may be feeling unprepared to manage the social and interpersonal changes that come with this period of transition. It’s hard for any of us to know what this next few weeks might look like. A bit like feelings of anxiety, it’s important to focus on what you can control or how you can be prepared, just as you have been over the past 16-18 months. This includes developing or maintaining a good routine, planning activities or outings and thinking about how your routines might change because of the easing of restrictions. In some situations, it is the change to a now established routine that feels uncertain and upsetting. Remember to take one day at a time and that any change requires a period of adjustment that differs in length depending on personal circumstances.

Grief

You may continue to be connected to personal experiences of grief, or a wider connection to the losses we’ve experienced as a wider community. Everyone’s experience of grief is different and may involve feelings of deep sadness, denial, changes to confidence, hopelessness and confusion about the future. If you feel able to, it might be helpful to speak to someone you trust about how you are feeling. If these feelings persist, it might be helpful to speak to a mental health professional or for some people, accessing peer support online in a safe community. The Mind website offers good suggestions of the types of communities that might be helpful.

Powerless and unheard

You may feel powerless or unheard as these changes occur. It is hard for any of us to say how best to manage these feelings and sometimes it can be helpful to share with someone you trust how you are feeling. It is important to note as well that organisations who understand mitochondrial disease are making every effort to provide timely feedback, support and guidance to relevant professional bodies about the concerns of our community.

Last year we shared some advice about how to manage the feelings that emerge in the context of COVID-19. One of the strategies we shared was ‘FACE COVID’, an acronym developed by a psychologist called Russ Harris:

F = Focus on what’s in your control
A = Acknowledge your thoughts & feelings
C = Come back into your body (noticing five things you see around you)
E = Engage in what you’re doing (be present)
C = Committed action (doing what matters to you)
O = Opening up (being kind to yourself and others)
V = Values (who or what matters to you most)
I = Identify resources (who are your supporters, who helps, what helps you cope)
D = Disinfect & distance (following the practices we know work)

We hope this brief update has been helpful in reminding you of the thoughts and feelings that might be arriving as we approach this transition. Whilst everyone’s experience is different, as a community we are here to support each other through this time. It’s important we try to maintain and support our communities whilst recognising that everyone will be going through this slightly differently. There is no textbook for us to understand what we do here; so take each day at a time, reach out for support and support the people around you. If you feel you need further support, then please contact your GP, local professional or seek further guidance from the NHS website or organisations such as Mind.

Finally, remember that any transition can make us feel uncertain, scared or a whole spectrum of different emotions. You’ve been here before at the beginning of the pandemic – we can do this again.

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