Five Years Later: Reflections on Life with Chronic Illness
Last month marked a rather momentous occasion in my life: the five year anniversary of the onset of my chronic fatigue syndrome (CFS). That’s right everybody. I have survived five years of living with a frequently debilitating illness. I have struggled through five years of debilitating chronic illness. Can you tell that I have some mixed feelings about this?
So many of the narratives about chronic illness that I grew up with seem to fall into one of three categories:
a) miraculous recovery
b) bitter crone
c) angelic martyr
Can you guess which category my story falls into?
That’s right! (Drum roll, please) Option d! None of the above.
I am still sick. As is evidenced by the fact that I cooked dinner on Friday, baked a dessert on Saturday, and proceeded to spend most of Sunday, Monday, and Tuesday in bed. Maybe recovery is somewhere in my future, but it isn’t in my present, and there are no guarantees.
I am not, I don’t think, a bitter crone. Certainly, people still seem to like being around me, and I have yet to get the sense that they only put up with my presence because they pity me. I still laugh, dance, and sing. I write notes, give gifts, and play with my nephew. I enjoy life.
And I am most definitely not the angelic martyr. My illness has yet to transform me into the sweet, selfless being who spends her days in bed writing letters and knitting socks. And I certainly haven’t transformed the life of a rough and tumble boy who falls in love with me, only to be devastated by the knowledge that I have an incurable disease, pushing him to go out into the world as a better man, while I waste away and die. More seriously, I get angry and anxious. I cry, complain, swear, and think about giving up. I’m human.
What I am trying to say is: life is hard and messy, and having a chronic illness only makes it harder and messier. However, that doesn’t mean that life is all bad. Some of the things in my life now are really good. I have lost a lot, but I have also gained a lot. There is much of my life before CFS that I grieve, but here’s a dirty little secret for you: I think my life now is better. And these things can all be true. It doesn’t have to be one of the other.
Let’s break it down, shall we?
The Bad
I had to quit my psychology degree, and this continues to be an ongoing source of grief for me. I love psychology, I love helping people, and I was set on becoming a clinical psychologist specialising in trauma. And I’m just not. Maybe one day I will be, but right now it feels out of reach. It is a dream that sits in a box under my bed, that I sometimes I pull out to wonder over, or to cry over.
I lost my health. This should perhaps be obvious, but I need to say it. It can be easy for me to forget that there was a time when I could cook a dinner, bake a dessert and not spend three or more days recovering. But I could, and even though I sometimes forget that, I can’t ever forget how exhausting and painful things are for me now. There is no escape. And it hurts.
I’ve lost friends. People who didn’t understand how impossibly hard it became for me to spend time with people, or to show up to events, and who didn’t make the effort to meet me where I was at. Everyone has their own struggles, and no one can maintain every relationship in their lives, so I’m not angry or hurt, just sad. I lost people I loved this way.
Life is incredibly uncertain now. Every time I think I’ve got a handle on my capacity and my ability to engage with my life, I’m proven wrong. And each time I am, I have to let go of goals, of hopes, of dreams, of plans. And that’s a lot of grief. It’s discouraging. I can’t count the number of times I’ve had to ask myself if getting back up is worth it. Are the the steps forward worth it when they are always followed by a backwards tumble?
The Good
I always get back up. I believe the Japanese have a proverb that translates to “fall down seven times, stand up eight”. Well, so far I have fallen down more than seven times, but I’ve stood up that number of times plus one. I have learnt that I am pretty damn strong. I mean, I’m back here right now, aren’t I?
On that note, I know myself better now. I have a greater understanding of what I value in life, what my passions are, how I enjoy spending my time and energy. After all, when energy is a limited resource, your priorities become pretty apparent. And because I know myself and my passions better, I am able to focus on learning, growing, and developing the skills I truly value. I have been freed up to embrace a lifestyle that suits me far better than the one I was chasing before.
The friendship that I have been able to maintain are deeper, stronger, and more resilient. These are people I know will stick with me through everything, and who know I value them. I’ve also developed a greater empathy for the pains and struggles of life, as well as stricter boundaries. I have always been empathic, but I have historically struggled not to be overwhelmed by that empathy. Now I know how to recognise when I am overwhelmed, and how to respond, making me a better friend and person. I understand that not everyone can understand my struggles, and I can’t understand all of other peoples’ struggles, but I also know how to show up in those times.
My understanding of God and my relationship with him has grown and matured. It looks nothing like what I thought it should look like, but it’s better now. I’m no longer in a rush to reach some nebulous finish line. Instead, I know that the joy and the growth is in the journey, and neither God nor I are interested in rushing it. If we are to be like trees planted by springs of water, we’re going to have to remember that it takes trees decades, sometimes centuries, to fully mature.
The Before
Before I got sick, I was living in a city that felt like a home, with people I adored (and still do). I was studying a subject I am passionate about, at a university that I loved, on track to do the work of my dreams. However, when ever I asked what I’d do if I had exactly one years left to live, my answer was always “not this”. So much of what I was doing only had value if I had a future. My uni days were something I needed to do in order to get to the life I actually wanted.
I loved many of the things I was doing, but the hustle of it all was exhausting. I think I was trying to become the kind of adult I thought I had to be, rather than allowing myself to grow into the kind of adult I am.
The same can be said of my faith. I was trying to become the “right kind of Christian” rather than giving my relationship with God room to grow and mature in a way that was authentic and vulnerable.
Everything was exhausting
The After
I am exhausted all the time, but, for the most part, it is an exhaustion of the body. Sometimes, okay, frequently, that exhaustion of the body can exhaust my mind and soul as well, but on the whole, I’ve found a style of living, of being, that fits so much better than the one I was trying to fit into. I love having the freedom to learn, to write, to create, to rest, to cook, and to spend time with friends. It’s how I always wanted to live.
But I would like to be well. I want to be able to work in the morning, have a cuppa with a friend in the afternoon, cook dinner in the evening, rest well at night, and be able to get up in the morning and do it all over again. I want to be able to get lost in learning a new language for hours and still be well the next day. I don’t want to have to plan what I do, when, based on how long it’s going to take me to recover. And when I do need to recover, I would like it to not take so long.
In short, I want the life I have now, but with a healthier body.
So… what’s next?
Well, in the immediate future, I finish drinking my tea. I schedule this post for publication, and I don’t look over it again, because I have done my best, and I don’t have the energy to stress about things not being perfect. I brush my teeth, maybe do a bit of crochet, and curl up in bed.
Sometime tomorrow, I will wake up. A few hours later, I’ll get out of bed, and I will do the same thing I did today: I will show up and do the best I can. And I will keep on doing that, on the good days, and the bad days. My best isn’t perfect, it’s not what I once thought it should be, and it always changes, but it is always my best in that moment. And, honestly? No one can say better.