What to expect, how to manage it and where to find support.
A diagnosis of mitochondrial disease can be unexpected, confusing and frightening. Initially, you may feel overwhelmed by a wave of emotion, from fear to worry to incredible sadness, despair and grief. However, the immediate reaction may also be one of numbness – frozen by the shock of the news. Some other common emotional reactions to 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 - in response to the loss of the life you thought you might have, or the life you expected for your loved one.
- Feeling powerless, or ruminating on all of the worst things that might happen.
- Regret or guilt – feeling that you could have done something to change the situation, even if that wasn't possible.
- Denial – being unable to accept the diagnosis or that something is wrong.
- Changes to your sense of self – a feeling that you are no longer ‘you’, or that your diagnosis is now part of you in some way.
There is no right or wrong way to be feeling in response to a diagnosis. People may have different emotions at different times, and not everyone will show their feelings in the same way. For this reason, it's important not to have expectations about how others should respond. Someone might not express their emotions in the same way as you, but that doesn't mean they don’t feel upset by the news. They may be coping with it in their own way, and in their own time.
Because everyone’s experience is different, it is hard to say with certainty what will be helpful. Here are some general guidance that might be helpful following diagnosis.
If you or someone in your care has received a diagnosis
- Try not to question your emotional experience or fight your feelings. Allow yourself the space to feel your emotions as they arrive. Not doing can result in increased stress and anxiety.
- Be patient with the pace of information. You are bound to have a lot of questions, and it can feel like you want all the answers right away. While it's natural to feel this way, try to remember that your doctors and consultants are doing all they can to help you, and be patient with them while they find out the next steps to help you manage symptoms and plan for the future.
- Avoid information overload. It can be tempting to google your condition and read about everything all at once, however not all the information you find online will be inaccurate or relevant to your diagnosis. Instead, use reliable sources of information such as your medical specialists, mito charities or support groups who have real experience of the condition.
- Connect with others in your situation. Receiving a diagnosis can be an isolating experience, and at first you might find it difficult to talk about it with others. But connecting with an online support group or attending a patient day will put you in touch with others who understand what you're going through, have lived through it, and who can offer you emotional and practical support. Many people who are affected by mitochondrial disease say that connecting with others in their situation made a huge difference.
- Recognise that change is difficult. Adjusting to life changing news is incredibly hard and takes times to digest. During this period, it's really important to focus on self-care. This means ensuring you have adequate sleep, nutrition and hydration, and exercise where possible. Try and maintain healthy habits and routines where possible, as these will directly contribute your emotional and physical wellbeing and help you through this very difficult time.
If a family member or loved one has received a diagnosis
- Offer your support. Be present and be there, in whatever way you might be needed. Try and maintain this over time, as often people experience lots of offers of support in the short-term, which then fades away over time. This is especially true for longer-term health conditions like mitochondrial disease.
- Listen. Simply by listening, you will be helping the person to process and come to terms with their feelings. You might feel like you're not much use, or like you want to 'fix' the problem for them, so remember that just by listening you are giving their feelings somewhere to be. Try to resist the urge to say things like 'everything will be fine' or 'I know how you feel', and don't compare their situation to someone else's. Everyone's experience is unique.
- Get informed. Finding out all can about the condition will help the person feel less isolated and you'll be better placed to help them. Make sure you use reliable sources of information (e.g. a charity, medical consultant or support group) and avoid giving the person specific medical advice or guidance that has not come from their specialist practitioner.
- Don't try too hard. Sometimes, the affected person might not want to talk about it. Remember to give them space, and don't take it personally if they reject your offer of help, or if they get angry or upset. If they seem to be managing, avoid telling them that they should talk.
If you or a loved one have recently been diagnosed with a mitochondrial disease, support is available through The Lily Foundation. Talking to someone who understands your situation can bring a sense of relief and clarity, and help you to plan a way forward. We can also give you useful information about support groups, specialist services, patient days etc.
To get in touch call 0300 400 1234 or email [email protected]. All conversations are private and confidential, and we respect your right to decide what's best for you.