Chances are you know somebody with a chronic illness. Contrary to popular opinion, a chronic illness is not an illness that is extremely painful (though they often can be). The ‘chronic’ in chronic illness means that the illness has been present for a long time. At least from my experiences, chronic illness can develop over time, slowly but suddenly — as bizarre as that might sound — and last months, years, if not your entire life. Examples of chronic illnesses can include — but are not limited to — Irritable Bowel Disease, Chronic Fatigue and, in my case, Epilepsy. The irony is that, with illnesses that are subtle or are hidden, people seem to assume that they know everything about said disease, whether or not that they have it themselves. Hence why I wanted to shine a light on why planning anything with a chronic illness is extremely difficult and unpredictable, but not impossible. Ultimately, I want you to come away with a feeling that you are not alone. Living with a chronic illness is difficult, however there is still hope, and things that we can do.
A little bit on what it is like
Hidden or otherwise, these illnesses do not only exist when someone else can externally notice that another person is struggling with an illness. Chronic illnesses are ongoing, and they are often a constant thought or consideration in a person's life. The reason I mention this is because I have Epilepsy, and I have had a few instances where I have told another person this, for whatever reason, and they have automatically assumed that I'm in immediate danger; I'm going to have a tonic clonic seizure at any moment. In reality, there is a lot more to it and I am not necessarily in danger — as they would find out, if they just give me a minute to speak, and answer any questions that I still have not made clear!
I have been known to have a seizure in front of somebody, and they do not even notice. Which is not a problem, in fact, pretty much the opposite. The point is, other people who put it upon themselves to worry about me and my conditions, despite me explaining the help I need and under what circumstances, can be really distressing — and that’s without anything actually happening.
The fact that I can have a seizure without somebody noticing just goes to show that somebody being aware that I have Epilepsy does not put me at less risk, or mean that they're been responsible for looking after me. Or — even worse — ‘saving’ me.
If I do have a tonic chronic seizure, I will need help, but even then, someone is not responsible for looking after me, as such. It is just what humans want to do: help and support each other, and that is something we would do for anyone. Ninety-nine-percent of the time I can articulate the help I need, as and when. If necessary, I can explain things multiple times, until the other person or persons feel reassured.
Although I know that explaining the condition is part of having a chronic illness, I do get annoyed that people put it upon themselves to be concerned about me, when it is a condition I have lived with for several years and — quite frankly — is a daily concern of mine. However, that is not to say that I am ungrateful for their concern. It is already a difficult balancing act, as I hope you're beginning to see.
A chronic illness is not just the flare ups, or the episodes. Outside of flare ups or episodes, a person is often recovering from the side effects, or the general fatigue of looking after themselves. For example, when I've had a seizure I can be tired, mentally drained, a little bit confused, and I struggle to coordinate myself physically. Often, this will mean that I just have to be careful with myself, and allow a few days to recover. But, as you can now see — aside from having the seizure — there are things that I have to cope with and manage, after the fact.
It can be very pretty unpredictable as to how the seizure is going to affect me. For example, on some occasions I can have a seizure and it has very little effect on me at all — and then other times, I can have a partial seizure and feel exhausted. From there, I have no choice but to have a nap before I can carry on with my day. This is a very tiny aspect of dealing with the condition, but you can already see how it could be an inconvenience, given the time of day or where I am. Even when I have recovered from these side effects, technically speaking, I could have a seizure at any time. If I do, the process of recovery starts again. To put this in perspective, if I were to have several seizures a week, then the process would never fully finish; it would be an ongoing process until that cluster of seizures subsides. More often than not, this happens all behind the scenes and I am able to at least keep up the pretence of going about my day as usual. Having said that, feeling fatigued is normal for me, it is more the level of fatigue.
Although I am talking about my Epilepsy in particular, there is my Cerebral Palsy as well. These considerations, these thoughts, these processes, these feelings, this exhaustion, generally carries across any kind of chronic illness. The type of chronic illness, and what the illness is often negates what symptoms or side effects — or how tired — somebody might get. Two people with the same condition will present differently; have different side effects as well as a range in severity. Something that does not occur to many people.
You are fine until you or not
As I've said, my chronic illnesses are a consideration and concern for me, regardless of whether I'm having a cluster or episode, or not. I have to prepare for the fact that I could have an episode. I need to manage this, along with the fact that realistically I need to get on with my day — as best as possible. I get around the side effects and obstacles as effectively as possible. Managing, and ‘getting on with it’ — I say dubiously — is all part of living with chronic conditions.
Only the other day I was at my weekly writing group, and I had two partial seizures whilst I was there. It was not a problem, because it is a case of me having these partial seizures, allowing my body the time, and then getting along with my day as usual. That said, I had done absolutely everything I usually do. I had taken my medication. To be honest, the seizures came out of the blue — but I had to adapt to the situation as best as I could.
I find the writing group to be very inspiring, so I use that day of the week to be as productive as I can. These particular partial seizures led to side effects of extreme exhaustion and fatigue, which then meant that I basically had to have a nap all afternoon. Despite this, I was able to go to sleep at the same time at night. Just goes to show how much energy I was using in a matter of seconds. That put an end to my productive day. Having said that though, having the nap so quickly after the seizure — and for such a long time — meant that I could recover quicker. As a result, the next day became far more productive.
The actual planning
On the one hand, I would argue that it is easier to plan with a chronic illness because you are constantly aware that it has to be factored into your day, so therefore it narrows down options, but then again you have to explain yourself and justify yourself a lot. Explaining yourself can be extremely exhausting in itself, because it is often something that we've had to explain again and again over the years.
However, having a chronic illness can make things hard to plan because you never know when you're going to have a flare up, when you can have an episode, or how you are going to feel from one day to the next. In fact, how I feel varies from one minute to the next. Again, there is the prospect of having to explain yourself if your energy levels suddenly change, or you need assistance in a different way to what was previously planned. I find that people often struggle if I have explained how I need help, and then one day it changes for one reason; they struggle to adjust with that change. That can be exhausting. Made worse, as it is something, often, we have lived with for a very long time. Again, I don't expect everybody to know everything about my needs and how they may change, in the same way I don't expect everyone to know everything about every condition under the sun. There are just too many, and frankly, people have got better things to be doing. Being open-minded, and willing to go with the flow, is key.
As a lot of people will understand, I find it a lot easier to have an episode privately, because I'm often around people that understand my condition; have witnessed it, or experienced it with me, if you like. However, in public I often need to articulate my needs again and again and again. Particularly if I've had a seizure, my recall can be restricted, because I'm extremely tired — complicating matters further.
I get the feeling that people with a chronic illness get used to having a Plan B, and a Plan C — should plans need to suddenly change. I have become so used to changing plans or ideas by the second. So, in a sense, we get used to planning in a huge amount of detail, but also being able to change those detailed plans in a matter of seconds. Which, on the plus side, makes us extremely good problem solvers. We get used to rolling with the punches, so to speak, and making the best of a situation. We have to make the best of the situation because, although we know our condition very well, we don't always know what we will be planning for. We learn to make the best of the situation, and do our best to articulate our needs of support or guidance.
Ultimately, it is important to remember that — although chronic illnesses can be restrictive and unpredictable — they are not the be-all-and-end-all, and we can get around these conditions. Make the best of opportunities, and have a laugh at the same time. It is something we have managed and coped with for some time, so —especially in my case — I like to address the situation mentally, and then I get up and carry on. I have no idea whether that is the best way forward, but it is the way that I have learnt to adapt and get on with my day, should something happen.
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