Having recently had a lot of time to think and to contemplate life whilst in the USA while my daughter undergoes aggressive medical treatment for a disease that the UK health system fails to understand or adequately treat, what has become even more apparent to me is the disparity between the ‘normal’ everyday world that healthy people live in and what seems like a ‘parallel universe’ inhabited by those who are sick or disabled.
My family lives in a parallel universe because my daughter is chronically ill. She mounts a daily battle against a cruel and debilitating sickness known as lyme disease with the hope of regaining some of the quality of life when her world was ‘normal’, some 8 years go. My observations may well resonate with people whose paths have crossed ours during our journey between universes.
In the normal world people go about their daily jobs and hobbies without giving the luxury of good health a second thought – and why shouldn’t they?
Meanwhile, in a parallel universe the chronically ill struggle to get out of bed and, if successful in doing so, may have just enough energy to have a shower but then be completely spent for the rest of the day.
In the normal world people have jobs, careers and a sense of purpose and self-worth, not to mention a degree of financial independence.
In the parallel universe people who are too ill to hold down a job spend the majority of their time at home – often in bed – relying on benefits to survive, never knowing when that financial crutch will be taken away from them.
In the normal world families can look forward to getting together throughout the year to celebrate special occasions with organised events, music and laughter.
In the parallel universe the chronically ill can’t plan events due to the fragile and unpredictable nature of their health and the inability to tolerate too much sound or light or the overstimulation of too many people talking at once.
In the normal world people are out and about keeping fit by running, swimming, cycling or doing pilates or yoga and enjoying an active social life that revolves around their hobbies. They are making new friends and sharing their hobbies with like-minded people.
In the parallel universe the thought of starting or going back to any form of exercise, however gentle, is totally beyond comprehension. When even standing up or walking a few steps causes heart palpitations and talking on the phone for more than a few minutes causes breathlessness and exhaustion. In this world it’s not uncommon to feel totally isolated.
In the normal world, a caring and knowledgeable GP or doctor provides a diagnosis when you are sick, gives you a treatment plan and provides reassurance that by following the plan you have a good chance of recovery. There is usually a proven path to follow with regular check-ups along the way.
In the parallel universe, if your sickness happens to be lyme disease, there is often no knowledge, recognition, diagnosis or effective treatment. You are very much on your own.
No-one chooses to live in this world where the weak and the fatigued are often either forgotten about or assigned by inexperienced doctors to the ‘you just have to learn to live with it’ pile. Those who are fortunate enough to have a strong ally to fight for them will arm themselves with knowledge about their disease acquired from books, the internet, support groups and conferences and question why they can’t have the treatment they so desperately need – but they won’t get far. They just want their lives and their futures back.
We feel fortunate that, thanks to the incredible support from friends and family, we have been able to embark on a long and difficult journey towards better health for my daughter. After 8 years of being passed from pillar to post with so many unanswered questions and no actionable diagnosis by any doctor, we finally have the recognition, knowledge, understanding and help to give her the best chance of escaping this parallel universe.
What inhabiting this challenging and confusing world has also given us is the opportunity to meet very special people whose lives have also been completely turned upside down by sickness and disease. No-one understands what we are going through like these people do. In the words of another lyme disease sufferer: “no-one gets it until they get it”.
We will continue to share love, strength, courage and, above all, hope to inspire each other to take little steps towards that normal world.