LIVING WITH IDIOPATHIC HYPERSOMNIA
Have you ever considered just giving up? I have many times. After many years of striving to be what others and indeed what I expected myself to be I have finally given up…. And the result? I wish I had done it sooner!
Labels don’t mean much to me but for some people, the terms “giving up” and even “giving in” have negative connotations. Some people prefer to use the term “surrender”. I will use the term acceptance because it best describes what I have done. I have stopped fighting against what I have no control over and in doing so it has allowed me to be the best person my brain/body is capable of being rather than continuing to have unrealistic expectations.
I honestly don’t know how I knew what I needed to do to turn my life around but I’m guessing it came about through desperation. I had hit rock bottom. My symptoms had become so difficult to manage I naturally thought that my Idiopathic Hypersomnia had got worse. So I started by looking into what would have caused it to progress. Much to my surprise, I found that research suggests Idiopathic Hypersomnia reaches its peak in young adulthood and remains stable, ie: it doesn’t get worse. So why was I struggling more than I ever have? Indeed, why did I find some days, weeks or months more difficult than others? Over time I spoke to and read the comments of hundreds of people diagnosed with Idiopathic Hypersomnia. I spoke to doctors and other healthcare professionals including clinicians and scientists that have studied Idiopathic Hypersomnia for decades. What I found is that aside from the people that have other medical and or mental conditions that can account for their symptoms the most likely reason Idiopathic Hypersomnia can appear to have worsened/progressed is because the patient’s ability to manage their symptoms is compromised by other external factors that they are not taken into consideration.
Chronic stress can have a huge impact on cognitive function. We also know that people with chronic illness are at greater risk of developing depression and anxiety and that this also impacts on how well someone with Idiopathic Hypersomnia manages their symptoms. But just how great can the stress be for someone with Idiopathic Hypersomnia?
The average person wakes up, gets ready for school or work, some people may also have a family that they need to get ready as well.
They attend school/work and social engagements. They are involved with family and friends and they participate in sports or hobbies. These are all very normal things that are expected of anyone but the reality is people with Idiopathic Hypersomnia have difficulties with all of those things, every day.
For many people with Idiopathic Hypersomnia, every morning is a struggle in itself yet once they are awake they are expected to stay awake all day despite an overwhelming need for sleep that they are never without, regardless of how much good quality sleep they have. For many, there is never any reprieve. The challenge is never ending but all too often this constant struggle is compounded by the expectations of others and indeed the expectation people with Idiopathic Hypersomnia place on themselves. Can you imagine what that would be like day in day out for years and years? Many people with Idiopathic Hypersomnia go for years without even knowing they have a neurological disorder that is responsible for what they experience. They have no “excuse” to offer others that criticise them and then when they are diagnosed they are left with a diagnosis that is often misunderstood by even the medical profession. It isn’t recognised appropriately in many parts of the world and there are no approved medications. The diagnosis quite often ends up creating more questions than it answers. The stress this can cause is enormous and quite often not surprisingly it results in depression and anxiety. This stress is chronic and its effects are damaging and long lasting.
So, what can be done about it?
I’m 45. I first noticed symptoms when I was 11 years old. I remember this quite clearly because I was in my first year of high school. My symptoms were put down to my transition from primary school to high school but it didn’t take long for me to know something wasn’t right. My need for excessive sleep was something that I was forced to incorporate into my daily life but even so, it never seemed to be enough. I knew that if I went to bed in my school uniform and skipped breakfast I could have more sleep in the morning but despite this, I still found it difficult to wake up and I was still often late. It took more than 20 years for me to be diagnosed with Idiopathic Hypersomnia. This, of course, was 20 years of constant criticism and judgement by others and me. I wanted many things in life and I tried so hard to work towards them. Not achieving my goals wasn’t something that I accepted lightly and then I had to face the judgement of others. On top of that were the numerous medical tests and doctor’s appointments and of course the judgement from many of them too. When someone is considered a hypochondriac often enough it isn’t unreasonable for them to start to wonder if maybe other people do struggle as much as they do. But not me. I have a drive and determination that I just didn’t see in many of the people in my life. If I could have overcome my need for excessive sleep I know I would have.
So why was I so hard on myself?
I don’t know but I do know that there was a lot of pressure on me to be “normal”. I certainly knew that being “normal” would have made my life a whole lot easier. Perhaps I subconsciously pushed myself beyond what I knew my brain and body was capable of because I was just so desperate for a “normal” life. Within a few years of me being diagnosed and spending that whole time learning to understand Idiopathic Hypersomnia, I finally realised I had to accept my situation and work with it not against it. But it was by no means an easy road to that realisation. I’m a wife and mum of two children (they were toddlers when I was diagnosed). I was working fulltime, mostly from home (due to my condition) and I did a lot of charity work. I’m not going to lie. There is no point in me saying that on the outside everything looked ok because it wasn’t. I was a mess. When I wasn’t asleep I was struggling to wake up and stay awake so that I could do everything “normal” people did. I resented the pressure of this and the demands of life. It made me angry. I cried, I screamed. My marriage was hanging by a thread - my sanity was hanging by a thread! And if that wasn’t bad enough I found my symptoms were harder than ever to manage (this was at the height of when I was convinced they must have gotten worse). I had a diagnosis and I had medication too but neither of them changed my situation much. What changed was me and when I did my whole world changed for the better. There wasn’t any one thing that was my lightbulb moment. What I’m writing about now doesn’t exist in the context of Idiopathic Hypersomnia so there were no words written by others that I could read that would tell me that it was ok to give in, surrender or as I say, “accept” my situation. There were no words that explained that chronic stress, depression and anxiety will make my symptoms more difficult to manage but I now know they do.
“…serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”
Acceptance is often something that many of us don’t even realise we need to do but I can assure you that until you accept your situation and live your life accordingly the people around you will find it difficult to reach the level of acceptance you expect and need from them.
Miracle cures aside Idiopathic Hypersomnia is a lifelong disorder. It does not magically disappear. That doesn't mean that treatments won't work or that they won’t help but rather the underlying problem is not going to disappear. It is ok to mourn the loss of who we were prior to the onset of Idiopathic Hypersomnia or to mourn the loss of who we hoped to be but we need to accept that we will never be that person again. Acceptance allows us to move forward and be grateful when treatments work. It allows us to start building a life that is suitable to our condition. It allows us to create our normal, a life that is free of unrealistic goals and expectations and instead is full of exciting new goals and more appropriate expectations. It also frees us from the guilt and shame that so many of us feel and that alone has a huge impact on how much happier and brighter our future will be.
More from Michelle...
"...imagine what it is like for someone who suffers from a chronic disorder that for many means NO amount of sleep guarantees they will get their “spoons” back. This is what living with Idiopathic Hypersomnia is like for most of us... The spoon theory for people with Idiopathic Hypersomnia can mean that they may never know how many spoons they are going to have from one day to the next because sleeping does not give us back a new supply of spoons. On top of this the medication we are prescribed doesn't treat the cause and it often makes the symptoms worse so it doesn't guarantee a new set of spoons either... So the next time you have an opinion about someone with Idiopathic Hypersomnia or some words of advice please remember these key points: Read more here
What is important for the health and well being of someone with chronic illness?
There is no one size fits all approach to managing chronic illness but there are things we can do that will help us make the most of living with a life altering condition. Read more here
Thank you for caring for someone with Idiopathic Hypersomnia
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. Read more here
Journal article - Bedřich Roth: pioneer in Sleep Medicine
Published in Sleep Medicine 3 November 2020