and wanted to share it with you. I’ve had the chance to tackle some of these mixed emotions through my book Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why. It’s a Christian book, but I found that the desire to have one’s illness UNDERSTOOD and VALIDATED is universal, despite your faith or your illness. It’s a natural human desire to need it validated. Whether we see this as a process of “learning to live with chronic illness” or a place we get stuck at makes all the difference in our own lives and those who share it.
Comparison is a part of human nature. Most of us still remember exam times at school. The questions of ‘how many hours did you study?’, ‘which questions/modules/chapters did you focus on?’, ‘Can I borrow your notes?’, ‘How long are your notes?’, ‘Did you read wider than the prescribed textbook, and if so, what did you read?’ Whether you were asking the questions or being asked, the question that at some point did arise in every mind was: ‘How will I compare to everybody else?’
Chronic illness provides the arena as school exams. There are serious illnesses and benign conditions, those who impact severely on life and those who have a negligible impact, those who will kill you, those who may kill you and those who definitely won’t kill you. That is the most pertinent question that seems to carry the most weight: ‘is it life threatening?’ Another question that hits the top five: ‘Is it legit?’
There are a number of ways to answer that question. There is the legal view point, and to answer that question, would mean checking on the legalities of the actions surrounding and involving the illness. Cancer is no more legitimate than Chronic Fatigue Syndrome, cystic fibrosis no more than fibromyalgia and applying for sickness of disability should not be a matter of which medical tests support your diagnosis, but on how your chronic illness affects your life and ability to function.
Public perception is another deciding factor in the quest to establish the legitimacy of illness. If your family, friends, co-workers believe and accept that your illness is real, life becomes much easier than when ‘they’ are under the impression that you may be malingering, exaggerating or faking it. Public perception tends to give more weight to life threatening illness that is well-known in the public domain, like cancer, than it does to either lesser known illness, like Scleroderma, or those with an unknown pathology, like Chronic Fatigue Syndrome. Public perception depends on the knowledge people have about certain illnesses and their attitudes are shaped by their awareness. The unknown evokes suspicion, and the controversial evokes doubt so that unknown and controversial diagnosis generally lead to suspicion and doubt in others.
It’s not the medical/legal viewpoint that is the biggest deciding factor, nor is it the general publics perspective. The only viewpoint that really matters is your own. However, the answer is not in comparing yourself to others and deciding where you fit in. If you know that you are not malingering, that your illness is real and that the devastating impact it has on your life is inescapable, you have legitimized your own illness. The decision of whether your symptoms / diagnosis / behaviour is legit, in the end, lies within yourself.