There is no cure for Idiopathic Hypersomnia and the medications that are used only partly help to manage symptoms. For many people, medications are often not effective long term and there are very few alternatives. There are no medications that help with the extreme difficulty waking up or the sleep drunkenness and there are no medications to help with the cognitive dysfunction either. Many people with Idiopathic Hypersomnia have no reprieve from their symptoms. There are no ‘good days’ just days that are much worse than their bad days, which for many is every day.
While there are some people with Idiopathic Hypersomnia that manage their lives sufficiently, for most people it is an enormous struggle. These people need practical help and support however sadly, many of them have to somehow manage to live without it. I’ve spoken to many people with Idiopathic Hypersomnia over the years, very few have the help and support or understanding from loved ones that they need. Many of them are carers themselves, either as parents of young children or carers of elderly family members or other people with illness. Every so often I speak to concerned parents, partners or friends of people with Idiopathic Hypersomnia. These people really care about their loved ones and it is such a pleasant change. Usually, the first thing I say to them is, thank you. I let them know that it might not seem like they are doing much to help but just believing in someone with Idiopathic Hypersomnia makes a big difference. Having to constantly explain yourself, or make excuses or apologise for something you have no control over is exhausting and it can become quite depressing.
If you are one of those special people that love and cares for some with Idiopathic Hypersomnia – Thank you! It’s not easy caring for someone with Idiopathic Hypersomnia. We can be irritable, disorientated, angry, frustrated, sleepy, disinterested and we can be asleep – a lot. Thank you for understanding that it is our condition, not us. Thank you for not taking it personally when we lash out at you when you are trying to wake us for the 100th time for something you know we need to be awake for. Thank you for saying “why don’t you go and have a sleep” when you can see that we are barely awake rather than say “you’re lazy! All you do is sleep!”. Thank you for everything else I haven’t mentioned but above all thank you for believing in us. Not being believed is a burden no one fighting chronic illness should have to bare. Written for the 2017 Idiopathic Hypersomnia Awareness Week