Epilepsy Blog Relay: Diagnosed with epilepsy as an adult

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Welcome to week one of the June 2019 Living Well with Epilepsy, Epilepsy Blog Relay. I hope you enjoy everybody’s columns and find them inspirational like I always do.

For me, Epilepsy has always been ‘my life’ from a young age. It has had an effect on almost every aspect of my life. It affected my family, and still does. It affected my friendship groups, it had affected people who pass me in the street, it has affected bus drivers, train rides, and I personally believe it affects people’s views of me in work. People are scared, and that is OK because I was scared too, but it doesn’t help the person with Epilepsy.

Epilepsy as an Adult

Since the last Epilepsy Blog Relay, I have met so many people who have been newly diagnosed with Epilepsy as adults.  This made me realize how much of an impact it has on adults who are diagnosed when they have children, jobs they’ve held for years prior to diagnosis, married etc, and it just got me thinking–how does Epilepsy affect every day life of adults.

Being diagnosed with Epilepsy as an adult, in my eyes, is possibly harder than being diagnosed as a young person. I say this because of personal experience. I have grown up, not really knowing any different. I have never driven a car, I have never really drank alcohol, I have started jobs with my employers knowing I have a condition already. But those diagnosed as an adult may have to stop driving. What if your job is 30 miles from your house and you rely on driving to get there? Or what if you work as a bus driver. What if you do a job that can’t be done if you have seizures, or you can’t handle machinery due to your medications? Things like this can have a huge impact on your life. All of a sudden you’re having tests left right and centre, and it is more than just trying a medication and getting back to normal everyday life.

You are not alone

Doctors estimate that about 1 to 3 percent of the population has some form of epilepsy. It is such a complicated spectrum of disorders. Some people have relatively easy to control seizures, others are a lot harder. Epilepsy is the fourth most common neurological disorder, and professionals say it’s more predominant than autism spectrum disorder, cerebral palsy, multiple sclerosis and parkinsons combined. 70 percent of patients can successfully manage their epilepsy with medication, whilst others (like me) face uncontrollable seizures and it is a lot harder. Epilepsy is a treatable condition – but it takes time.

Professionals say [epilepsy is] more predominant than Autism Spectrum Disorder, Cerebral Palsy, Multiple Sclerosis and Parkinson’s combined.

There are resources

Now, as an adult who is newly diagnosed-try not to panic. This is easier said than done, I know. But whilst you are going through your tests, or getting used to your medications, you are covered by the equality acts (or the Americans with Disability Act, in the states) and you are classed as disabled by the equality laws if you have epilepsy that has a substantial effect on your day-to-day activities. Or would have a substantial effect, if you were not taking your epilepsy medicine.

Related: Americans with Disabilities Act and Epilepsy

How to handle epilepsy at work

If you have a type of epilepsy that is not currently causing any problems and doesn’t need epilepsy medicine, but could be triggered by specific certain circumstances, then you are likely to be covered too.

In the UK

“Never keep your condition, or current investigations to yourself, always tell your employer or head office in order for you to get your support. Employers have to make reasonable adjustments to help an individual with epilepsy enter into or continue to work by ensuring that the individual isn’t at a disadvantage compared to someone without epilepsy.”  – Emily

In the US

“In the States, it is sad to say but not everyone is as enlightened as we would like them to be. Remember you are not required to disclose your disability in an interview or on the job. If you are in need of reasonable accommodations then it may be in your best interest to disclose at a time that works for you and your employer.” – Jessica

There are certain jobs that may be unsuitable for people who suffer with uncontrolled seizures, however, including working:

• at heights;
• near open water;
• with high voltage electricity;
• on or near moving vehicles;
• operating rider operated machinery or heavy plant;
• with unguarded fires, ovens and hot plates;
• in isolated environments.

If you are unsure how to talk to your manager about your epilepsy, have your Neurologist or GP (primary care doctor) write a letter first. If you are concerned about your transport to work, the cost of public transport etc-look into your local area options. For example, where I live in the UK, you can get free bus pass, a railcard and an Access to work scheme where your work can cover the costs of travel.

Related: Epilepsy and Transportation

But what about the stigma?

There is a lot of stigma around Epilepsy, even now in 2019. I still have people contact me saying I can’t live a normal life, that I have my head in the clouds, is my Epilepsy contagious, what if I swallow my tongue or how many times I have swallowed my tongue. I even had a man on a bus tell me that it was part of a curse and that I shouldn’t be allowed out. Stigma or myths doesn’t upset me anymore. As a child when I didn’t get invited to parties because my friends parents didn’t want that ‘burden’, it bothered me a lot. But as I have gotten older I have taken it upon myself to raise awareness and fundraise to slowly get rid of the stigma and myths around it. You can read my ideas on Living Well with Epilepsy about how to get involved in raising awareness here.

Anxiety and Epilepsy

The last thing I would like to cover is dealing with anxiety when living with Epilepsy. This is a huge one, and it affects most people with Epilepsy. My biggest tip for you, which again is difficult, is Acceptance. You need to accept that you have Epilepsy. It is one of the most difficult things you can do but it will change your life and once you get on top of that, you can conquer anything! There will always be things in life that are out of our control, and many times these are the things that create the most anxiety. Epilepsy is unpredictable, and sometimes uncontrollable. It can be challenging to overcome the fears and worries associated with the unknown, but it is important to understand that spending time focusing on these unknowns does not change them. You can worry all day about having a seizure when walking to the shops, but will it prevent the seizure? Most likely not, it may even cause a trigger due to stress.Identify some of the situations or concerns that cause you the most anxiety, and ask yourself if these things are under your control. If the answer is yes, identify the tasks you need to complete to get rid of this worry and go and do them. If the answer is no, realise that there will always be aspects of our life and the lives of others that we cannot change and remind yourself it is okay to accept this. I have a sketch on my phone with a worry chart on it, and if I am ever overthinking something, I take time out to read it and do some deep breathing.

What to do about the worry?

I got married in February this year, and I lost sleep over worrying about having a seizure on the biggest day of my life. Did I have a seizure? No thank goodness, but did I lose about 4 hours sleep a night worrying about it? Yes, I did. The night before my wedding, I had a pamper evening. Although you probably don’t have time for this every night, especially if you have children and can’t even use the toilet in peace, take time out at least once a week to unwind and relax, and it will also give you something to look forward to if you are having a hard time.

Relaxation techniques can differ from person to person, as each individual relaxation and peace in different activities. There are many techniques you can use to try to calm your anxiety. Practicing deep breathing can relieve tension and restlessness; take a moment to close your eyes and focus on your breathing when you feel anxiety coming on. Others find practicing yoga or meditation to be calming. Listening to or playing music, reading, and exercise are other activities that can help take your mind off of your fears and help you feel relaxed, such as a pamper night. Try a few of these techniques to see which are most effective for you.

Your turn

Please keep me updated on what you do to ease anxiety, how you manage your new diagnosis or what happens with work, because I would love to hear your story.

NEXT UP: Be sure to check out the next post by Whitney at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.