An open letter to FGN (fibrillary-immunotactoid glomerulonephritis) by Gareth Hughes
I was sceptical when I was offered an appointment with a renal counsellor. I’d always poured a bit of scorn on mindfulness and “talking about your emotions”. Turns out that accepting that first appointment is the best thing I could have done. It has helped me realise that I’m actually carrying a lot of guilt, fear and anger around about this disease and I need to put those feelings where they belong and let it all out.
Jackie, the renal counsellor at Kidney Care UK, urged me to share this with all my friends and family. To make what is invisible visible. To separate the disease from myself, box it off and shine a light on it. Because the problem is not me and I need to stop feeling guilty about it. I didn’t ask for any of this and I’m trying to get through every day the best that I can, making each day as good as it can be.
So here is my open letter to FGN (Fibrillary-Immunotactoid Glomerulonephritis).
I feel guilty when I get tired after work and spend my evenings drifting off to sleep. I will berate myself when I wake up halfway through the TV program I’d been enjoying. That’s not my fault. My body can only handle so much now and I have to accept that this is what you have done to me as you weave your tiny fibrils around my kidneys. I also have to remember, that’s what catch up TV is for!!
I feel guilty about the reduced hours that I work now. I worry that people think I’m not up to the task anymore. I am up to it but I need to work in a different way now and manage my job around the fatigue that you cause me. I also need to congratulate myself on the positive fact that I am working again. I’m back doing what I love. It’s giving me purpose and a focus. It’s a battle I win every time I push through the early morning pain and go on shift regardless of it.
I feel guilty about missing out on social events with friends and family. It’s not because I don’t wanna be there. I miss these things more than anything, however sometimes, the only answer is rest. It’s not an excuse. The harsh reality is that work pays the bills and keeps a roof over my head. The stresses and complications of managing health care services takes my energy reserves and leaves little for anything else. Don’t judge me for this. Don’t speculate that I don’t wanna be there or feel I’m uninterested. I am just doing what I need to do to get through life right now.
I feel let down that there’s not enough support in this country for people with kidney disease. That avenues of financial support and benefits seem closed to someone who has contributed to the “system” for over 25 years and is now struggling. The points based welfare system is fundamentally flawed to the point of being cruel. It gives no consideration to the psychological impact of progressive diseases, the financial implications of being forced to reduce working hours due to health issues, the increased costs of managing a health care condition or the stigma around invisible illnesses. In short, it is not fit for purpose.
I feel angry because you came into my life and destroyed my future plans and aspirations. You tore my hopes and dreams apart. I failed the adoption medical because of you. That was the cruelest blow you dealt me.
Why do you have to be so rare? Why can’t you be common as muck and mundane. Found in less than 1% of kidney biopsies, even my nephrologist struggles with answers and treatment options at times. However he’s also humble enough to reach out to others for help. Something I’m grateful for. I’m also grateful for the amazing doctors, nurses and consultants in our wonderful NHS. It must be protected at all costs from those who would seek to divide it up and sell it off for personal gain.
I feel embarrassed about the drenching sweats you cause that can come on suddenly. Please understand that part of the kidneys job is to regulate and clean the blood which also regulates temperature within the body. As this disease progresses and my immune system goes haywire, that balance is disrupted, leading to sudden sweats and fevers I have no control over.
I feel guilty when I veer from the sometimes restrictive diet that is set. It’s probably one of the aspects I struggle the most with. I will eat something I shouldn’t, almost in rebellion to you, but you’ll take your revenge the next day or so.
I feel scared for the future sometimes. I’m fully aware of the prognosis and the stats that you bring. My anxiety builds every time my blood is tested. Will this be the time that you score a knockout punch that sends me straight to the dialysis ward?
“But you don’t look ill”. Could anything possibly be more frustrating than those 5 words. How is one with a progressive disease supposed to look? Is there a make up kit that can help us achieve the stereotypical ghastly grey that most people define as illness? We feel constantly judged and defined by our outer appearance. The stigma of invisible illness continues to affect us all.
Every day, I feel like I’m at war with you. Some battles I win. Then sometimes you’ll take me down hard. Each day is a never ending dance between us. I am caught in your grip, an unwilling partner dancing to a song I’m not that keen on.
But time is gradually giving me the moves to cope. I’m no strictly superstar, but I’m gradually getting my own rhythm back. I’m taking control of the beat. There is light and hope on some days and the song is sometimes pleasing to the ears again.
I am sharing this to try and make what is invisible visible. To separate the disease from myself. Because the problem is not me and I need to stop feeling guilty about it. I didn’t ask for any of this and I’m trying to get through every day the best that I can, making each day as good as it can be.
I will always be “fine” and smile brightly because nobody really wants to hear anything other than “I’m fine”. Illness is uncomfortable to people. But inside, deep down, sometimes I’m not fine. Allow me to not be fine. It’s one less thing to feel guilty about.