Emotional support after a mitochondrial disease diagnosis

This page focuses on the emotional impact of diagnosis and offers supportive guidance for patients, families and loved ones. If you’re looking for practical information about diagnosis and next steps, you may also find our guide to receiving a mitochondrial disease diagnosis helpful.

Common emotional reactions to a mitochondrial disease diagnosis

Being told that you or your loved one has mitochondrial disease can be emotionally overwhelming, even if you understand the medical information you’ve been given.

Many people describe experiencing a sudden wave of emotions, such as fear, worry, sadness or grief. Others feel numb or frozen at first, as the news takes time to sink in. There’s no single ‘right’ way to react, and different feelings may come and go over time.

Some other common emotional reactions to a mitochondrial disease diagnosis include:

• Anger – a feeling of ‘why now’, or ‘why me/my child?’
• Fear or anxiety about what this might mean for the future
• Grief – for the life you thought you’d have, or the life you imagined for your loved one
• Feeling powerless or finding yourself focusing on worst-case scenarios
• Regret or guilt – feeling that you could have done something differently, even when this isn’t the case
• Denial – being unable to accept the diagnosis or believe something is wrong
• Changes to your sense of self – feeling that life has shifted, or that your diagnosis is now part of who you are

People experience and express emotions in different ways and at different times. Someone may appear calm, quiet or practical on the outside, while struggling internally. Others may need to talk, cry or express their feelings openly. There’s no correct timeline for adjusting, and it’s important not to judge your own response or expect others to respond in the same way.

If you’ve received a diagnosis (for yourself or someone in your care)

Because everyone’s experience is different, it’s hard to say with certainty what will help. the following suggestions may be helpful in the days and weeks following diagnosis.

Allow yourself to feel what you feel

Try not to judge or fight your emotional reactions. Allowing yourself the space to experience your feelings can reduce long-term stress and anxiety. There’s no need to ‘stay strong’ all the time.

Be patient with information and next steps

It’s natural to want answers straight away, and you probably have lots of questions. While it’s natural to feel this way, some things take time to clarify. Your doctors and healthcare team are there to help and will work with you to plan next steps and manage symptoms as more information becomes available.

Avoid information overload

It can be tempting to search online for information and read about everything all at once. While learning more can be helpful, not everything you find online will be accurate, relevant or appropriate for your situation. Try to use reliable sources such as your medical specialists, trusted mitochondrial disease charities (such as The Lily Foundation) or support groups with lived experience.

Connect with others

Receiving a diagnosis can feel isolating. At first, you may find it hard to talk to family and friends, but connecting with others who understand mitochondrial disease – for example through online support groups or patient days – can make a significant difference. Many people say that speaking to others with similar experiences helps them feel less alone and more understood.

Recognise that change is difficult

Adjusting to life-changing news is extremely difficult and often takes longer than people expect. During this time, try to focus on self-care where possible, such as getting adequate sleep, staying nourished and hydrated, and maintaining a gentle exercise routine where possible. These small things can support both your emotional and physical wellbeing to help you through what’s a very difficult time.

If a family member or loved one has received a diagnosis

Offer your support and be present

Let them know you’re there for them, and try to maintain that support over time. Often, offers of help are plentiful at first but fade away, especially with long-term conditions like mitochondrial disease. Continued presence can mean a great deal.

Listen

Simply listening helps people process their feelings. You don’t need to offer answers or solutions, and it’s okay not to know the ‘right’ thing to say. Try to resist the urge to say things like ‘everything will be fine’ or ‘I know how you feel’, and try not to compare their situation to others. Every experience is unique.

Get informed

Finding out all you can about mitochondrial disease can help the person affected feel less isolated and help you feel more confident in supporting them. Make sure you use reliable sources of information, such as healthcare professionals, reputable charities or support groups. Avoid giving medical advice or guidance that hasn’t come from their specialist team.

Give space when needed

Sometimes, the affected person may not want to talk, or may feel angry or upset. Try not to take this personally. Giving space can be just as supportive as offering help, and it’s okay if they sometimes decline that support.

Need help?

If you or a loved one has recently been diagnosed, mitochondrial disease support is available through The Lily Foundation. Talking to someone who understands what you’re going through can bring relief and clarity and help plan a way forward.

You don’t need to be in crisis to get in touch – whether you’re feeling overwhelmed, confused or simply need someone to listen, support is available.

Call: 0300 400 1234

Email [email protected]

All conversations are private and confidential, and we respect your right to decide what’s best for you.