Emotional support for mito families

This guide explores what emotional support can look like for people living with, caring for or grieving someone with mitochondrial disease. It explains UK options for counselling, urgent mental health help, bereavement support and grief models, alongside practical coping ideas. Readers will also learn how to connect with The Lily Foundation community for peer spaces, information events and simple ways to stay involved.

A mitochondrial disease diagnosis can change daily life in countless ways. There’s the shock of unfamiliar language and acronyms, the uncertainty of treatment options and the relentlessness of appointments and tests. Alongside the medical journey sits an emotional one. You might feel anxious, numb, angry or strangely fine until a wave hits later. All this is common, but it’s important to acknowledge that support matters as much as diagnosis and treatments.

At The Lily Foundation, we meet families every week who tell us the same thing in different words: they want space to talk, people who understand what they’re going through and practical guidance that fits life with a rare disease. This guide brings together what emotional support can look like for people living with, caring for or grieving someone with mitochondrial disease, and shows how to access free and low-cost help through community, peers and trusted services.

What emotional support means in a rare disease context

Emotional support is any kind, practical or therapeutic help that reduces distress and builds coping in the face of difficult circumstances. In a rare disease context, it often includes:

• Space to process uncertainty and shifting diagnoses
• Strategies for anxiety, low mood and health-related stress
• Support for carers and siblings who carry invisible loads

It can be a listening call, peer groups, a supportive message at 2am or a cup of tea with someone who ‘gets it’. For mito families, medical complexity and unpredictability add another layer. You’re not overreacting if you feel on high alert. You’re simply adapting to something difficult.

If you’re new to mitochondrial disease and want a clear overview of the science and care pathways, our accessible resources on What is mitochondrial disease can help you feel more grounded as you navigate the support available.

Ways to connect with the Lily community

Not everyone wants a big group chat on day one. That’s okay. We offer different routes to connect: 

• Weekly virtual coffee mornings and a monthly evening session, informal and drop-in
• Private Facebook groups for adults and families living with or bereaved by mito
• Support Weekends and Patient Information Days where you can meet others and hear from clinicians
• Webinars and recorded talks you can watch in your own time, with practical tips for day-to-day life

If you prefer to listen first, you can join a session, keep your camera off and speak only if you want to. Many people tell us that simply hearing similar stories helps them feel less alone.

Getting individual support

One-to-one support can make a difference, and there are several routes:

• NHS Talking Therapies: In England, you can self-refer to NHS Talking Therapies via your local service website. In Scotland, Wales and Northern Ireland, contact your GP for counselling options. Waiting times vary by area.
• Local and condition-agnostic services: Many hospices, carers’ centres and community organisations offer free or low-cost counselling, practical advice and group support for carers, adults and young people.

Please note: Access to our Rareminds counselling partnership is currently very limited. If you’re interested, please speak to our team so we can advise on availability and alternatives.

Bereavement support that understands mitochondrial disease

Grief in rare disease can begin long before a death. Many families experience anticipatory grief during illness, followed by bereavement when someone dies. Bereavement support means compassionate care that helps you process loss, hold memories and make space for complex feelings. It can involve counselling, group support or gentle rituals that honour the person you’ve lost.

Who can you talk to about bereavement? Options include your GP, NHS Talking Therapies, local hospices with family support teams and national helplines such as Child Bereavement UK. Some people want mito-specific spaces through our community groups; others prefer local, in-person support. Both can help.

Can you get grief counselling on the NHS? Usually, yes, through NHS Talking Therapies in England or via your GP across the UK, though services and waiting times vary by area. Your GP can also advise on specialist options if your grief is complicated or prolonged.

Grief models, the 3 C’s and their limits

People often Google models of grief to find shape in chaos. Two ideas come up a lot:

• The 3 C’s of grief. Versions differ, but a useful reframing for mitochondrial disease is: Choose small, doable actions; Connect with people who understand; and Care for yourself with basics like rest, food and movement. These are not rules, just anchors when days feel stormy.
• Stage models. You may see five or seven stages. These can validate emotions, but grief doesn’t run in straight lines. With mitochondrial disease, you might circle through shock, anger, sadness and acceptance many times, including during anniversaries, hospital stays or care changes.

What about delayed grief? Some people feel numb or focused on practical tasks, then emotions surface months later. Symptoms of delayed grief can include waves of sadness that feel out of the blue, irritability, difficulty sleeping, trouble concentrating or avoiding reminders. There’s no expiry date on grief. If daily life feels stuck or overwhelming, counselling can help.

What should you avoid while grieving? There are no perfect rules, but a few gentle cautions help many people. Try not to isolate completely for long periods, skip medication or essential appointments, make major irreversible decisions in a rush or judge yourself for how you feel. If you use alcohol or other substances to cope, consider extra support and safer alternatives.

Practical coping ideas that fit rare disease life

Small, repeatable practices often work better than grand plans. You might try:

• A five-minute check-in each morning, naming one feeling and one need
• A tiny routine for transitions, like a walk after appointments to release adrenaline
• A worry window, 10 minutes on paper, then back to what’s in front of you
• One connection a week: a message to another mito parent, a forum post or joining a coffee morning

When you have more bandwidth, our community events, including our Support Weekends, can be restorative stepping stones.

Ways to stand with the mito community

When you’re ready, some people find that taking part in awareness or fundraising offers purpose and connection. You can explore gentle, low-effort ways to fundraise in your area or read how to fundraise for mitochondrial disease with The Lily Foundation. Many supporters start by setting up a JustGiving page in memory or in honour of a loved one, inviting friends to share messages and photos at their own pace.

Quick FAQ for common questions

• What does bereavement support mean? Compassionate help after a death, including counselling, peer groups and practical guidance that make space for your feelings and honour the person you’re mourning.
• Who can I talk to about bereavement? Your GP, NHS Talking Therapies, local hospices, Child Bereavement UK and Samaritans for out-of-hours listening. Our team can also connect you with mito-specific peer spaces.
• Is there a grief helpline? Yes. Cruse Bereavement Support offers a national line; Samaritans 116 123 is 24/7. We can signpost mito-specific options in our community groups.
• Can you get grief counselling on the NHS? Typically, yes, through NHS Talking Therapies in England or via your GP elsewhere in the UK. Waiting times vary.
• What are the 3 C’s of grief? A helpful reframing is Choose small actions, Connect with others and Care for yourself. Use them as flexible anchors, not rules.
• What are symptoms of delayed grief? Emotions surfacing months later, sleep issues, irritability, trouble concentrating, avoidance or sudden waves of sadness. Support is available whenever you need it.
• What should you not do while grieving? Try to avoid prolonged isolation, skipping essential care, making rushed irreversible decisions or self-judgment. Reach out if alcohol or substances are becoming a crutch.

We’re here for you

You don’t have to face mito alone. Contact The Lily Foundation on 0300 400 1234 or [email protected] to ask about peer spaces, community events or practical help. Find out more about mitochondrial disease support on our website. We can also help you navigate NHS services and local support. If you want to learn more about living well with mitochondrial disease, you can watch a recent webinar and browse our resources for carers and families.

If you feel able to take a small step for the community, you can explore simple ways to fundraise or start by setting up a JustGiving page in honour of that special someone. Every act of connection brings more support and more hope to families facing mitochondrial disease.