If one were to have a conversation with me, one would not see it. If one were particularly observant one might think that I look tired or perhaps a bit pale. It is unlikely that one would imagine that I have an invisible illness which impacts how I relate to the world and almost every decision I make.
I have chronic fatigue syndrome and anxiety. Chronic fatigue syndrome has been part of my life for almost thirteen years and not to sound like a cliché, but it has radically changed my life. After several months at home in bed, at age eleven, I left primary school to be home educated. I did not return to formal education until I was eighteen. I spent the next three years doing GCSEs and A-Levels in order to find an alternative route to college than doing the Leaving Cert, which I felt would be quite exhausting for me. A-Levels can be more spread out than the Leaving Cert. The classes were scheduled like a college course with two hours of class per subject which suited me. One of the reasons why I did not attend secondary school was that while the secondary school I was meant to attend wanted to accommodate me, their only condition was that I was not a part-time student. I could not attend half of the school day and then leave early to rest, which meant that I could not attend that school and continued to homeschooled. Fewer hours required for in-person education meant that I was able to return to formal education and everything else that was required of me I could do in my own time. As this quick glance at my educational history shows as a result of my chronic fatigue, I have had to live a life and at a pace that differs from the norm.
A question that many philosophers and theologians have grappled with is how to understand one’s self or soul? Am I just my body? What is the relationship between me, my body, and my actions? As someone with a disability, it is hard not to attempt to disentangle me from my invisible illness. For a long time, I did not refer to myself as disabled as I did not feel that I belonged to the category. Looking back, it is difficult to pinpoint why this was, whether it was due to the fact that the images of people with disabilities in our culture do not tend to include disabilities like chronic fatigue or the occasional comment that questioned the reality of my illness or a sense of shame. But I know that for a long time that I did not feel comfortable talking about having chronic fatigue and would only do so when necessary. I rarely spoke of it to my friends. Some of my friends as a teenager would not have known about it. Now I try to be more open about it when I meet people, let my friends know of how I am really doing, and to let others know my limits.
The relationship between me and my disability is probably always going to be some degree tense. For example, it is difficult to not feel frustrated with my body at the moment for all of the low energy days when it is the summer and I no longer have all of my college commitments. What is the point of having all of this time off if I do not do anything with it? I do not want the summer to disappear in a blink of an eye as I struggle with brain fog. But there was a time when the relationship between me and my disability was worse. I have never lived in such a way where I ignored the practical implications of my fatigue, but I certainly ignored the chronic aspect. I wanted to believe that it would go away, even though that is not the nature of chronic illnesses. One learns to adapt one’s life to one’s chronic illness, to find ways, such as medication, which can improve one’s life. It is not about finding a miracle cure. By accepting my disability as being part of me and being more open about it has made it somewhat easier to live with.
Treating the disability as other to me rather than part of me can help to reinforce a “Manichean” impulse. The Manicheans were a heretical Christian sect in antiquity that saw the material world, including the body, as evil and sought for the soul to escape the material world by living a perfect life full of self-discipline. It is easy to see my body and its limits as something I need to overcome, that if I really try, I can defeat the brain fog and fatigue. But if I accept the Manichean view of my disability, then it is my fault that on the days where I am filled with fatigue and brain fog that I am unable to do much of anything, that I cannot escape my body. This is not a healthy narrative. The truth is I am bound to my body and its limits. By not seeing my disability as something that I am war with, I can begin to accept that I will have bad days, where I struggle to concentrate and work, and that it is okay.
I know of many homeschoolers who are very sociable, however, I am not one of them. Due to my disability, I am challenged about how social I can be, and at times, it is hard not to feel frustrated. I am a shy, introverted, and anxious person. In the attempt to disentangle me from my chronic fatigue and anxiety, it is tempting to wonder if I could have been different, whether this is the reason for how I act when socialising with other people.
As a child, I was much more at ease interacting with people than I am today. I remember being at a party with people who I went to school with l after I had left and one of them remarked that I was very quiet. The implication was clear that they thought this was very odd. Today, I do not imagine that I could find anyone who would be surprised to hear or observe that I am quiet. I am aware that it is not uncommon for people’s personalities to change during their teenage years due to a new school, new friends, hormones and many other challenges and experiences.
The alternative Niamh who never got chronic fatigue syndrome and left school may also have felt very shy and awkward. She may have drifted away from the same friends that I did. But it is also true that as a result of my health I spend a lot less time hanging out with people than the average person and as a result, it is hard to deny that it has not had some sort of impact on me. I often feel like I do not possess the full social script. I am terrible at small talk. It feels much more natural to me to hang around campus on my own than with people. I prefer hanging out with people one on one, as I find groups difficult. As part of my brain fog, my ability to think can at times feel slow. With lots of people, I want to register I have understood what an individual has said and consider carefully my response, but a conversation usually moves faster than I do. I do not feel I can easily join conversations. My anxious brain often does not like it whether or not I speak. If I do not speak and observe what happened, I can struggle with the sense that it does not matter that I was there. If I speak, it can almost feel as if I was speaking while on an adrenaline and that afterwards, I crash and becoming anxious and fatigued. I do not feel that I can really remember what I said exactly, but my feeling is that everyone must have thought I was awkward. While this may sound like I live in some sort of dichotomy, the reality is that there is a variety in the intensity of the emotion. I have heard it said that college is more than just academia, that it is important to get out there socially or words to that effect.
As someone with chronic fatigue, I have been unable to have that experience. I used to imagine that when I went to college, I would go to debates and maybe even take part in them, that I would be active in several societies and possibly on the committee of one society. But the reality is that with every year of college I attend less and less events. This year, I have only attended one society event (I do not think that if COVID-19 had not happened that number would be higher) and while I signed up for a debating competition in first year, by the third week of college I felt so overwhelmed by college work that I decided not to compete. When you are constantly worrying about having a bad energy day, when you cannot work late at night and therefore, cannot leave one’s work to the last minute, it is important to ensure that you keep on top of your workload.
I have heard many people with disabilities say that they go through periods of mourning for the life that they might have lived were it not for their disability. Sometimes one is hit by a wave of what if, what if, what if? Acceptance is a journey and it is not a straight line. Personally, I try to focus on what brings me joy. One can never know what the alternative history would have entailed, but there are parts of my life that I love, some of my friends and the choice to study my course in college, which might not be there if the particular succession of events of my teenage years did not occur.
There are times when I feel so different from most people and I wish that I were more comfortable being sociable, but to use a political cliché we are where we are. There is more work I feel I need to do in order to improve, albeit within my limits, but I have also made progress which is important to recognise. In reflecting upon my life as I wrote this piece, I have seen that I have made progress since my teenage years, even if it is not as much as I might like. But I hope that just as I have accepted that my educational journey has not been typical, I can accept that the way I interact with the world may not be typical but it too is a journey and that I do not need to be normal.