Mito On The Mind

When you are given a diagnosis of any illness, the impact on your mental health and wellbeing can be profound. When you have been told you have a mitochondrial disease, this can affect every aspect of your thinking, feeling and day-to-day living as well as the physical body.

We have put together this collection of coping mechanisms. Whether you have a mitochondrial diagnosis yourself, a loved one has been diagnosed, or you have sadly lost someone to a mitochondrial disease.

It can seem impossible to think positively about your situation. This is completely normal and justified and it is perfectly reasonable to feel angry at the world. But it doesn’t have to be this way forever. There are more people affected by similar issues than you may think and support is available.

Some may have to deal with loss, from abilities and skills, independence, dreams and even loved ones. We hope these tips may offer ideas to help you feel better equipped to handle whatever comes next.

Don’t blame yourself

There is a maze of complicated biological reasons why each individual person is affected in such a unique and specific way. Any parent may feel guilt or responsible for their child’s illness and the person who has the illness may feel guilty for the stress that Mitochondrial disease brings a family. But please don’t. It is nobody’s fault, it is simply the lottery of life. It is important to keep links with family and friends as it can be a very isolating illness.

You are unique so your coping mechanisms will be too

There is no rule book on how to deal with a diagnosis as no two people are the same. Some coping mechanisms may be to utilise hobbies, interests and therapeutic activities. These may help you to adjust to a new situation.

Find a way to deal with the past so you can enjoy the future

Many find anniversaries to be particularly tough, whether of a birthday, death, diagnosis or another significant day. There is no right or wrong way to express your grief, but for example if it is a death, you may find that doing something special on the day to remember the person can help you to feel some peace, by remembering the good times and happy memories. Maybe lighting a candle for some people offers time for reflection. Sharing positive memories with loved ones, is a good way to keep memories alive without focussing on what you have lost.

Find a way to express yourself

It can be difficult to express how you are feeling, and sometimes you don’t even want others to know. Sometimes finding an outlet that is interesting to you, that allows you to be angry, happy, afraid, honest. Being creative to show expression of feelings can be therapeutic and reflects how you are feeling at the time. It may be having a coffee in a café either alone or with a friend. Or a professional counsellor may be the answer to confide your feelings in a confidential setting.

Keep your mind busy (with positivity)

Sometimes one of the hardest things you may have to accept is that your plans for the future will have to adapt and change. This may not be easy to do. You may become depressed at various steps throughout your journey: It might be hard to be positive at times. All these are normal feelings.

Writing may help

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Get Creative

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Deep Breathing

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Treat yourself

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Learn a new skill

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Talking to People

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Use your Local Hospice/Day centre

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Joining a group of like-minded people

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Be kind to yourself

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(some gentle ideas for coping with loss)

Use technology to grieve with others

Grief can make you feel isolated so it’s especially important to try to feel connected with others. Technology can facilitate this and help you to grieve collectively.

Grief is a natural process and we will all go through that, but it’s important to be aware of complex grief. Some people may feel the trauma of losing loved ones without being able to say goodbye. Grief will affect people differently. The best thing to do is talk about it.

Don’t be afraid to ask for the help you need If you’re grieving, it’s important to try to have some element of routine in your life, whether that’s a daily walk or your connection with people.

We all say to people who’ve been bereaved: “Let me know if I can help” and when we’re grieving we always say: “Yes I will.” But it’s important on both sides to actually be specific in that. Eg Say: ‘I’m going to give you a call at 6pm tonight.” or “I’ll send you a text in the morning.”

The following links resources may help those struggling