LIVING WITH IDIOPATHIC HYPERSOMNIA
7 things that have - and could have - improved my quality of life over the last 7 years as an Idiopathic Hypersomnia sufferer
As a condition that affects every aspect of one's life, it is a distressing reality that having Idiopathic Hypersomnia is extremely likely to affect one's quality of life.
I am lucky that my quality of life now is infinitely better than when I was first diagnosed 5 years ago. While this improvement is largely due to changes I and my loved ones have made, I think it is important to recognise right at the start that disability only exists in a social context; people are disabled because society exists in such a way as to prevent them from fully engaging. For example, if our workplaces relied heavily on people being able to hear sonar, then everybody bar vampires would be "disabled" by that. It is important to remember that it is not just up to the individuals involved - often those with the least power to change - to modify their behaviour, but for Society to modify itself. This is the only way we can become a truly inclusive world in which those with disabilities and the skills they bring can be fully appreciated.
With that said here, is my list of things that have and can improve my quality of life, which I hope will be useful to fellow sufferers, their friends and family, healthcare workers and researchers and anybody helping to build a society in which Idiopathic Hypersomnia sufferers can have the best quality of life possible:
1. Understanding that my time is precious
When Michelle contacted me asking if I would like to apply to be an Ambassador for this week, she said something I do not hear nearly enough: "I recognise that as an Idiopathic Hypersomnia sufferer, your time is precious". Recognising this has been vital in improving my quality of life. One of the blessings I guess of having less time than others by virtue of being asleep for most of the day is that it does force one to reconsider one's commitments and what one really values. This is a valuable life lesson for anyone, Idiopathic Hypersomnia patient or not. It is important that you prioritise fun time as well as work
However, having Idiopathic Hypersomnia does require that I spend a large proportion of my waking time doing what I call "disability admin". If there are state benefits I'm entitled to it takes up a lot of time to apply for them. At my university, I have spent months arguing for and negotiating extra time as an adjustment to put me on equal footing with other students who do not have this condition. This, unfortunately, means I have spent so long doing this that, in reality, the extra time has been all but spent in the process of applying for it!
I would urge any organisation that is serious about supporting disabled individuals to think carefully about how much time and energy they are asking of them in order to access support. This includes emotional energy - talking about one's limitations and how hard a time you are having without support is often very stressful, especially to those who have yet to come to terms with their diagnosis (if that is ever truly possible). Organisations need to reflect on whether they are really supporting or if they are actually demanding more of those disabled individuals.
2. Recognising the importance of lifestyle adjustments
When I first heard the words "idiopathic hypersomnia", the sleep consultant immediately followed them with talk of stimulant medication. I had been severely ill for three solid years, being regularly unable to consistently do basic self care such as dressing or eating by an appropriate time in the day, let alone being able to hold down a consistent source of income. I didn't need a discussion about tablets which - as others have described elsewhere on this website - have limited efficacy, myriad side effects and only treat symptoms not the cause. I am very pleased for any fellow sufferer who has benefited from Modafinil or other stimulants, but focusing on a purely medication based solution to improve quality of life is very misguided. I was grateful just finally to have some recognition that my symptoms meant something, but what would have helped me most would have been recommendations on the pretty extreme lifestyle adjustments I now find myself making. Sadly in the UK, NHS sleep clinics focus on extremely basic "sleep hygiene" (if given any advice at all it is largely aimed at those with INsomnia not HYPERsomnia), which recommend "the obvious": "have a bedtime routine and stick to it"; "get light and exercise during the day". Not very helpful for someone with sleep behaviour so extreme that I don't wake up while my partner hoovers next to me.
Although I have found medication partly helpful, the two things that have improved my quality of life most have been:
#1 When I stopped trying to fight sleep and adjust myself to society's schedule, and instead adjusted my schedule to fit my sleep. I let people know I may have to cancel if I fall asleep. I try not to overdo it by booking in many events one after the other like I did prior to having this disorder ie: (if I have a lunch time event, I try not to have an evening one too, and I try to limit "going out" at the weekend to Friday OR Saturday night, not both). I don't plan anything whatsoever before midday - flights, appointments, meetings, nothing - and I make it clear to people that this isn't something I can negotiate on. I have found that telling people that I have a disability and that I identify as disabled helps people to understand that this is as reasonable a request as someone who uses a wheelchair saying they cannot make a meeting on the top floor of a building that only has stairs.
3. Accepting help - but also that carers need care too!
The second most helpful lifestyle adjustments I have made is not really to do with my behaviour, but changes that my partner -Matt - has made. #2 Matt has made significant changes to his employment so that he can work flexibly. This includes working from home most days so that he can help me wake up in the morning. Matt helps me limit my energy expenditure so I can save it for things I can't delegate by helping me with meals and in general with planning my days and my life. Matt has taken on this role like a saint, but it is important to acknowledge the impact caring has on an existing relationship. Matt receives very little support and therefore feels responsible if for example he has to be at work and I don't wake up all day and as a result do not eat anything. He also feels understandably guilty if he ever feels overwhelmed by his caring role, and this can affect people's relationships. In addition, I often struggle with guilt for relying on Matt so heavily - and frustration that I need to, and cannot live my life as independently as I want to.
My quality of life could be massively enhanced if the support for Matt and therefore carers, in general, was improved. Recognising the weight they carry on their shoulders is important, and as friends, family and a society, we need to do more to help share the load. Emotional support for both carers and those who have experienced difficulty in their relationship due to the introduction of a care dynamic is needed.
I’m very fortunate to have Matt however it is important to be aware that disabled individuals are generally at much higher risk of abuse from partners, as friends may not see how care can be used as a manipulation tactic, as disabled individuals can fear no one will be there at all to help them if they speak out.
4. There is no health without mental health
Both my partner and I have struggled as a result of the pressures put on us by my disorder. To improve quality of life for people with Idiopathic Hypersomnia, it is vital that we recognise the great strain having such a little understood and pervasive disorder has on people's mental health.
It is important for me to point out that there is a big difference between having depression that causes sleepiness and having a chronic health condition that causes you to feel depressed. I have had several practitioners insist that my disorder is simply a severe form of the hypersomnia seen in atypical depression despite the fact that I sleep at least 10 hours a day and sometimes more whatever my mood. This theory was one of the reasons it took 3 years after I first became too ill to function normally for me to be seen at all by a sleep specialist - prior to that I kept being referred to psychiatrists. This prolonged my correct diagnosis and prevented me from being able to develop an appropriate treatment plan sooner.
People with any kind of chronic disorder including Idiopathic Hypersomnia can have depression. In fact, they are more likely to given the huge pressures it entails, and the fact that being asleep all day, missing out on life and all the things you used to do and enjoyed prior to becoming ill is pretty depressing! It is also true that Idiopathic Hypersomnia also puts you at risk of other conditions caused by malnourishment and/or dehydration due to sleeping through meals, lack of exercise or being in a horizontal position for so long each day, or just the general effect of having a "more pressing" health condition to worry about making other medical problems only urgent when they are at a worryingly late stage - but I think given the impact mental health has on quality of life it is particularly important to recognise.
I believe researching the impact of Idiopathic Hypersomnia on mental health, and how to improve mental health in people with Idiopathic Hypersomnia is vital.
5. Reaching out to other disabled people
One of the great benefits that came with accepting my diagnosis and acknowledging that I was now "disabled" was that I suddenly was aware that I was part of a network of people who were also "disabled". In my experience, the internet and social media, in particular, is a great place for reaching out and sharing experiences of disability. Not everyone might have Idiopathic Hypersomnia, However, how to manage common symptoms and worries about income and stigma are shared by many disabled people. When you are limited in the amount you can leave the house and/or do anything I have found social media networks a godsend.
6. Knowing your rights - fighting discrimination
Disabled people including many Idiopathic Hypersomnia sufferers now have a number of legal rights that are supposed to enable us to have a higher quality of life than we have done in the past. This is all very well however many people do not know about the equality legislation that applies to them and people in the position of power often fail to implement it. I often say that I have become an accidental expert in equality legislation as a result of this disorder (I wish someone would give me a certificate so I could flash it when I apply for jobs!) but I wish that hadn't had to become one.
When I first got very ill with Idiopathic Hypersomnia, I was in my final year of my undergraduate degree at university. I had lived a fairly privileged life up to that point. I, therefore, had very little experience of direct discrimination. When I got ill all that changed and I did not have the knowledge or experience to equip me to fight it. I naively thought my university knew what the law was and would implement it. If I had known then what I know now about my rights in that situation (where I was left to fend for myself) I would have had a pretty different undergraduate experience. I still have to fight for my legal rights, but at least now I know what they are. I would recommend anyone with Idiopathic Hypersomnia or supporting someone with the condition to get very up close and personal with the Equality Legislation in your country and what support that means you can expect in terms of "reasonable adjustments" that are required of employers and educational institutions for example. It is absolutely not your job to do this, but my experience has been that it is best to assume that employers etc don't know the law and then be pleasantly surprised if they do, rather than the other way round.
If you are helping someone with Idiopathic Hypersomnia it is important both to ask them what they need (respecting that they will know their condition best) but also to allow them the space to change their mind and to reassess if something is not working. One of the top things that could improve quality of life for people with this condition, in my opinion, is much better training in our schools, councils/government departments, workplaces etc as to what the law is and what rights disabled people have. It would be so amazing to live in a world where other people are the experts on this (currently they are not - even in a number of jobs where you would really expect them to be), and I can get on with the business of living with my illness!
The final top thing that I believe could improve quality of life for people with Idiopathic Hypersomnia is not only to reduce discrimination (as a result of not knowing what adjustments should be made for us), but also the stigma that comes with it.
So many times when I reach out for support, be it at my university or to my local social services, there seems to be an automatic assumption that I am not disabled until I prove otherwise - normally with an extensive collection of doctors notes. As I have said above this not only takes up a lot of my already limited time, not least of all because I usually have to dictate letters myself to my doctors as they know much less than my condition than I do, but it makes me feel that apparently, my word alone is not enough. This is rather disheartening considering my words written down by someone with MD after their name is worth a lot more.
The attitude that disabled people are liars unless proved otherwise is particularly hard for people who suffer from conditions like Idiopathic Hypersomnia where the symptoms are not easily visible. On a daily basis, I question myself, "am I really tired? do I really need to sleep? can I really not get out of bed?" driving both me and my partner slightly mad with self-recrimination. This damaging self-questioning is only reinforced by the myriad proof I have to provide every time I declare my disability and was one of the reasons I took so long coming to terms with my diagnosis.
I feel lucky that I do not have one of the even more stigmatised conditions, but there is still a lack of knowledge amongst the wider medical community, let alone outside it. I think doctors should be aware of the problems they create particularly when they themselves participate in this stigma with bizarre theories that would be completely inappropriate in the NHS (public health system) for other illness (cancer? ah, trying to avoid work are we?). I think that reducing discrimination and stigma is very important. We can all play a role in this by spreading the word about what life is actually like with a chronic disorder such as Idiopathic Hypersomnia. Which is exactly what this awareness week is all about!