172/365 – Making sure your loved ones have support

Myasthenia has several negative implications, and if you look carefully positives ones too, for people diagnosed with the condition. However, it also has an impact on those around you which sometimes can be easy to forget with the all hospital appointments, blood tests and medication switching.

Last week, at the Young Myaware Group, one of the members spoke openly about the impact a parent getting diagnosed has on a child. It’s one thing if you’re mum and dad have always had it and you are brought up used to the alterations life post MG entails. But what about watching your healthy parent transform before your eyes – bloating on steroids, weakening from lifting a limb and not being able to read you a bed time story any more because of speech difficulties.

Then there are the partners and parents of people with myasthenia who have to watch the same transformation helplessly. They also are more likely to have to deal with the psychological impact of the condition – the mood swings, lows and restlessness that the drugs can create. 

It’s important to allow those who care about you space to grieve. In my case, I’ve also found it’s important to allow those loved ones to help wherever they can. It decreases their feelings of helplessness and also allows you to be vulnerable and to be shown that people still care. 

Make sure the people who look after you are looked after too

While there is lots of support for people with myasthenia through Myaware and other communities, it’s also important that those loved ones have support of their own. Whether it’s a group of friends who can help keep their sense of perspective, a child speaking to Childline or a school counsellor or even an organised group/activities for the loved ones of people with myasthenia. 

There was talk at the meeting of organising a Myaware picnic so that member’s friends and family can speak to others in a similar position. If there is not something like this available in your area, and you feel there are people in your life who need it, why not set something up?

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