Living with Idiopathic Hypersomnia in the UK is not easy. Life is hard in many ways and it is a daily struggle.

Idiopathic Hypersomnia is an “invisible” illness. You may look great to the outside world, but inside you will feel extremely sleepy. Suffering from the side effects of some fairly powerful medication is no help either.

People, in general, aren’t good at accommodating invisible illnesses. You may have issues in getting people to take you seriously.

Many people view themselves as “sleep experts”. This extends to informing you of all sorts of “real” solutions to improve your sleep. This is usually without understanding one little bit about how your illness mainfests.

Yoga, more green leefy veg, no coffee after 3pm… you name it, there are a billion solutions out there.

It is unlikely that any are for you, but you often have to continually listen to these opinions.

Here’s an interesting video off YouTube of “Things not to say to someone with Idiopathic Hypersomnia“.

Of course, that advice would never be proferred if you had any well known illness or issue, but “all you have is a sleep issue”. If reality you have a poorly understood complex neurological disorder.

Issues in daily life

Travel

Travelling may be an issue especially if you drive and  have been advised to hand in your drivers licence to the DVLA because of your sleepiness.

You still need to plan on how you’ll travel. Issues exist around how you’ll deal with unexpected sleep, waking up and the associated sleep drunkenness. Also if you’re flying anywhere, many countries ban all sorts of stimulant medication even if you’re just in transit.

Giving up driving

The DLVA now say that you must tell them “if you are very sleepy during the time you’d normally be awake because of a medical condition”. The associated document does not specifically name IH, but it talks about excessive daytime sleepiness.

You may not want to hand in your licence, but now falling asleep at the wheel, is being viewed poorly by the police and the DVLA. If you drive whilst knowingly impaired it may also affect your insurance cover.

Doctors, and other medical professionals, are now obliged under Law to inform the DVLA if they have advised someone to not drive. This is especially valid if they believe that the patient is ignoring their advice. The aim is to get the patient to inform the DVLA first, which is a better solution for everyone.

However this is all up to the individual and is a personal decision. If you are used to driving it is hard to adjust at first, but it can be done. I know this myself.

Getting your licence back

This isn’t a short or easy process. You may need to undertake a “measurement of wakefulness” test to show you are fit to drive. The DVLA may issue you with a short-term (1-3 year) licence, which you will need to renew, but it is still a full licence.

If however, you didn’t voluntarily surrender a licence when you should, the DVLA may assess you as High Risk. This will impact on how and when you get your licence back.

If your consultant is happy that the treatment is working, it is likely that they will liaise with the DVLA to help your re-application.

Travel benefits with IH

Idiopathic Hypersomnia does not give you any disability travel benefits automatically. However if you have surrendered your licence, individual organisations like Transport for London (TfL) and Transport for Manchester (TfM), and the Bus and Railway companies, may consider you for a disabled travel pass based on you having a licence refused for a medical condition.

Work

Addressing issues at work when living with Idiopathic Hypersomnia in the UK is easier now that the Equality Act 2010, is in force. This states that workplaces need to make reasonable adjustments to accommodate any disability.

(You may not class yourself as disabled, but your illness does allow you the benefit of the Act).

The question here is what counts as “reasonable”. It helps if you can provide the solutions to the required adjustments.

ACAS provides some very good information on Reasonable adjustments in the workplace and point out that.

“Under the Equality Act 2010, a person is disabled if they have a physical or mental impairment which has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities.

Impairment means condition. It may be physical, mental or both. But whether a condition is a disability will, in most cases, depend on all the facts and circumstances of the individual case. Long-term means lasting at least a year, or likely to be for the rest of the person’s life or recurring.”

Also, you may need to explain things to your colleagues at work who might chafe at adjustments made just for you. After all, they can’t see how IH is impairing you.

Hypersomnolence Australia do a very good explanatory leaflet that you can print out; this should help.

Medication side effects

There is another hidden issue as discussed previously. The medications we take have a number of side effects which become part of our daily lives.

I won’t list them but here is one link that may help. Also read the package leaflets for your medicines or the various company websites.

Which side effects affect you is a very personal thing but you will need to manage them.

Always discuss these side effects with your consultant and GP. They may have solutions to help manage or mitigate them. As some side effects can be quite harmful, you do need them to know what is going on.

Claiming Benefits

Living with Idiopathic Hypersomnia in the UK should allow you to claim benefits if life is hard, namely Universal Credit or PIP.

I have found that the DWP have zero understanding of the issues around hypersomnias. Their assessment reference points do NOT acknowledge sleep to be an issue when looking at disability.

What you have to do is to show how your idiopathic hypersomnia, at its worst, stops you from performing those activities that the DWP have down in their assessment process.

This could be about cooking a single course meal from fresh ingredients. You may:

• not be awake enough to prepare and cook a meal
• have a habit or falling asleep whilst cooking, which is a serious safety issue.
• be too sleepy to leave the house safely to go shopping.

Support for claiming

Narcolepsy UK may be able to help with a submission but their resources are limited.  They have experience of successfully supporting people through their UC/PIP applications. You do need to call them before you start, not part way through, so that they can be effective.

In addition the Disability Law Service have provided advice on how best to make a PIP application. This information is also relevant to Universal Credit. The DLS is a charity specifically set up to help people with disabilities and illnesses and offer a phone in service with law professionals.

The advice is a useful starting point in anyone’s application. However it may be best to call the DLS, or Citizens Advice for advice pertinent to your situation.

If you’re planning on making an application, make sure you have all of your information to hand. Letters, reports, drug prescriptions, descriptions of your illness, and some referees who can attest to your problems.

Have a folder with everything in, and with your own notes and comments. If “Brain Fog” strikes at any time, this is especially useful. The process is not very empathetic, and slow to help, but quick to hold to account.

Take your time on any application. When you need to attend an interview, take someone with you who understands your situation. (This counts as a reasonable adjustment, and they should not be able to refuse to accommodate it).

Do not try hard to put on a good face, or be at your best. Any assessment is about when you’re struggling, and the assessor will be taking notes all of the time.