Learning to live in ‘No man’s land’
Last Reviewed 20/02/2020
How I found myself in ‘no man’s land’
I have a rare chronic illness; it has a significant effect on my life, there is no getting better, but I also don’t spend every week in the hospital. The struggle just continues with no end in sight. I never get the ‘all clear’ or hear the words ‘we are discharging you’. Yet, I hope to live a ‘normal’ life and deal with what is thrown at me. In reality, I live in a strange place between sickness and health.
My disease is a rare form of vasculitis (inflammation of my blood vessels) and aortitis (inflammation of my aorta). It prevents me from doing exercise and leaves me with extreme fatigue. I have damage in my nose, ears, kidneys, aortic arch and coronary arteries. I’m immune suppressed and take between 15 to 20 tablets a day, plus I have five-hour biological infusions every four months to keep everything under control.
The hardest part of all this is the mental understanding that I am not (always) sick enough to be in bed or hospital. Still, I am not well enough to work full time and enjoy an active life. I find this limbo very distressing and difficult to process.
I am not well
There are many things I cannot do. I have to avoid lifting heavy items, exercise which puts pressure on my heart, stress and ‘overdoing things’. Most days even walking with my children is a challenge. And on top of all this, I have been on prednisolone (a type of corticosteroid) for eight years (with dose ranging from 7-40mg). I have never managed to get this drug dosage to a low level. The obvious side effects include weight gain and a beautiful moon face. And so, at 45, I walk and act like a 90-year-old and have gained far too much weight.
Some days I want to go back to bed after simply managing a shower, other days I can walk the dog for miles. I don’t know which type of day it will be when I wake up. I cancel too many engagements, and yet I keep booking up social events as I am determined not to be beaten by this dreadful disease. I am physically restricted, and I need annual MRIs, regular echocardiograms and ECGs. My blood tests are so frequent that I am on first name terms with the phlebotomists at the hospital. The risk to my body is severe.
But I’m not totally ill
When the disease is under control, I work from home, I look after my children, I walk the dog (slowly), and I try and live a ‘normal’ life. I meet friends for coffee and nobody would know I am ill, I smile on the school run and I make sure I am the most positive and engaged person in the room, no matter how I feel inside.
Living this way is my choice, I don’t want to classify myself as ill, so I decide not to put that façade across to others – instead I am smiley and happy and pretend all is ‘fine’. But all is not fine and I struggle every day, I take my tablets, and I create as normal a life as is possible. I don’t want to be ill. I am sure that somewhere somebody is shouting that this is the wrong way to cope, and it may be, but for me this is my way of coping. I cannot let my illness consume me.
I have slightly ruined my plan of hiding my illness by writing a book about how I have coped for the last eight years and now friends understand my coping method. I can no longer hide how dreadful I feel. I think this may be a good thing, but it can be a little frustrating now that friends can see through what I am doing.
Living between sickness and health
I accept that I am ill, but I also want to live my life as best as I can so I watch my health, but I do not live through my illness. I am still me, and I still have my ambitions and dreams, even if some days they seem insurmountable. I will continue to try and live as if all is ‘fine’.
The land in between sickness and health is a lonely place and we need to share our stories as this helps us gain strength and provides support to our community. I will continue to live positively in this funny no man’s land.
About the author
Jane Edwards is an author of ‘Chronic Illness: Learning to live behind my smile’, about a journey of learning to live with a rare, invisible chronic illness.