Why me? I’ve spent so many years waiting for the elusive answer to my question. I’ve wanted something easy, a quick fix that solves every problem with minimal effort from me. I know that’s not how life works, but I think it’s also incredibly human to measure your success using everyone else as your benchmark. It never felt fair that I had to work so hard to have what everyone else my age seems to have – a functional body.
This is a toxic way to think. There is no magic solution or quick fix. I can’t alter my genetics. I was given genes that make me vulnerable to autoimmune illnesses and their endless complications. Sickness is inevitably always going to be part of my life, but I am no longer evaluating my worth using my health. I’ve built myself into so much more than the sick girl. I work in a profession that is dedicated to helping others, and I am successful at it. I am an aunty and a role model to my beautiful niece. I am a girlfriend. I am the emotional backbone of my family. I am empathetic and insightful. I am a writer. I am trying to make the world a better place. I am valuable in more ways than one.
I’m not going to lie and say that this period of self-growth has been a walk in the park. It has involved endless doubt and fear and unflinching scrutiny of everything I am. Recently my health issues have reared their ugly heads and forced me to fight even harder to maintain everything I’ve been working towards. My digestive tract is struggling. I keep vomiting partially digested food after eating. I’ve had intestinal motility issues for over 12 months, with chronic diarrhea, and have now stopped absorbing a range of vitamins and nutrients. I am medically malnourished. Physically, I feel as though I’m surrounded by a haze of exhaustion. Mentally, I’m a little discouraged by this relentless rollercoaster. I’ve been working so hard, striving to be as ‘normal’ as possible – working myself to the bone to juggle my job, my family, my friends and social commitments, exercise and diet, along with all the medical appointments, hospitalisations and medications that come with managing my health.
So last Friday, I forced myself to attend a gathering with my partner at our friend’s house. I knew I wasn’t well enough, but I didn’t want to give in. Everyone keeps commenting on how well I’ve been doing, and that sometimes feels like immense pressure, as though they’re all holding their breaths waiting for my next inevitable decline. I had only been there for about 10 minutes when one of the girls asked me how I had been. I tried to shrug it off with the usual, “good thanks”, but for some reason I just couldn’t get the words out. I could feel her waiting for me to respond, but I just sat there on the couch, watching everyone around us talking and laughing. I felt like I was trapped in some bizarre fishbowl, present but not really participating, and I just started crying. The tears just started spilling down my cheeks in an endless torrent. Once I started, I couldn’t stop. All of the frustration, sadness and sheer exhaustion just kept pouring out of me. I felt my friend’s hand on my arm. Her concern was palpable. She asked what was wrong, but all I could taste was salt. They were all there, all concerned about my well-being, but I didn’t know how to articulate it. How do I explain how lonely I feel in this journey when I have so many people that care about me? How do I tell them it isn’t always enough?. How do I make them understand just how hard I have to work, every single second of every single day, to maintain some semblance of stability? I’m so scared sometimes, overwhelmed by the uncertainty, frustrated with that constant sense that I have no power over my body and that I’m just along for the ride. So they ask me what’s wrong, and I tell them that I’m just tired, because I don’t know what other words to use to capture this endless cycle of grief.
Admitting that things feel hard does not mean that I’m giving into my illness. I’ve grown so much this year, and I’ve become someone that I’m incredibly proud of. I’ve conquered so many of my fears. I’ve made myself vulnerable. I have fought to be more than my genetic code and my dysfunctional immune system, even when I haven’t really believed that I am. I think this struggle will always form part of my journey, but I realise now that these moments of sadness do not mean that I’m failing. I am not failing. I am feeling what I need to feel so that I can keep moving forward.