The most challenging aspect of my condition? Fatigue. It’s there all the time: dragging its heels behind me, setting limits around my life, dictating what I can or can’t do. Rebellion is always at my own peril. I spent years fighting fatigue, subject to endless scepticism and constant instruction that being more active, and joining the running-fad, would give me more energy. It didn’t. It led to total burnout. I got to a point where I couldn’t think through basic tasks like making a cup of tea, I would look at my husband and not be able to remember his name, I cried every day. It scares me to remember.
Diagnosis brought a wave of relief. This was not all in my head and I finally had permission to be tired. Lifestyle and energy management would certainly help but there would be no cure. I wasn’t sad, frankly I was sick of trying to cure myself. Finally, I could be with whatever was present each day and not feel bad for not feeling better.
My husband was the only person who never judged me and who showed unfailing kindness through my darkest days. We already knew that he couldn’t have children, but I was still seriously thinking about the possibility. It was devastating when he named, as kindly as he could, my worst fear: I wasn’t well enough. It felt like such a personal failure. Mothers are praised for being able to do everything, look after everyone and I wasn’t even able to look after myself. I felt that not only was I missing out on this huge life experience but that not being more able somehow made me less worthy.
Six years post-diagnosis and I am coping better. Working full-time left me with zero energy for a personal life, but I did it because it felt so unfair to lose income over something I didn’t ask for. I had already taken a major step down because I didn’t have the energy to pursue the career I had put so much time and effort into working towards. I needed a job that I could manage on the bad days – which are still often and many. Eventually I went part-time in an effort to have a life. It’s amazing how many people will resent you for working part-time even when they know you have a disability. I have to remind them that they would probably prefer not to have my illness. A counsellor once said to me ‘You’re very defined by your illness’. Yes, I thought, haven’t you been listening? It has been defining in so many ways. It doesn’t mean I can’t be happy or have new dreams, but it would be foolish to think it’s not relevant and present every day of my life.
Chronic illness has meant my childlessness has been accompanied by many other losses: loss of income, loss of career, and loss of friends too – some because there was no understanding of my health issues, others because I found it too hard to witness them starting families and making new ‘family’ identities. Once my condition was properly treated, I also had to face the painful truth that I was well enough to care for a child, but not if I had to work as well. Even with us both working, we can’t afford to start a family.
Worst of all, I completely lost my sense of self. I was a high energy, outgoing, fun-loving person. Now I’m quiet and introverted, and have to be very selective about what I choose to spend energy (and money) on. In my 20s I was proud of my achievements and sure of my place in the world, now I’m haunted by the feeling that I should have done better, done more and feeling ashamed that I haven’t.
We are both disconnected from our families, emotionally and geographically, and moving around a lot means we don’t have strong social or support networks. Growing up, I found my family life suffocating and familial relationships volatile and damaging. At my lowest, childlessness made me feel that my life was empty. I envy my busy neighbours with their constant stream of multi-generational visits and parties. And I also remember how much of my life I spent wanting to escape all that. I’m not seeing my quiet life as empty. It’s created space for other meaningful work, not the out-there-visible-contribution sort, but the internal learning-to-live sort.
I’ve mourned my young self, along with her hopes and aspirations. They’ve gone, but someone new and interesting is rising from the fog of illness and grief. Most surprising of all? I like her. I’m focussed on getting to know this new self – one who is more conscious, more intentional and more connected with the earth. A self who prizes slowing down and who remembers to pause before jumping in. A self who is less reactive and who has more space to be with others’ suffering. A self who thinks about our impact on the environment. A self who doesn’t know it all, still gets it wrong and who is always growing and learning. This is my contribution and it matters. I might still mourn the losses, but I also appreciate the three things I have in my life that I wouldn’t give up for the world: freedom, spaciousness and love.
Roshni K