1. The grief we feel over the life we’ve lost may re-emerge now and then…indefinitely.
One life event that can happen to anyone at any time is to be plagued with a chronic illness. There is indeed a grieving process that goes with any life-long illness. In many ways it is no different than facing other major life losses, such as the loss of a relationship or loved one. Unless you are or become chronically ill (and let’s hope you do not) you could have no idea what people go through regarding grief as it pertains to being chronically ill. There’s a lot to grieve over—the loss of the ability to be as productive as we would like, the loss of friends, the loss of the ability to take part in favorite activities, the loss of independence and even worse…like Hayley suffering grief from the on-going pain she has. Any pain that remains constant is a slow torture and most certainly can push any person, even a young child or teen, to want to end it all.
There is no worse feeling, especially as a teen, than the one you get when you feel as though you have let someone down. Being chronically ill means you may not know how good or bad you will feel on a certain day and therefor making plans in advance with friends can bring on great anxiety. With chronic pain you never know what each day or even hour might bring. When Hayley was younger she would excitedly fill her weekends with fun things and accept invites to fun places from many friends and one by one she would have to back out. Even worse there were, and still are, many ignorant parents who were not educated enough to explain to their own children that Hayley was very ill and could not always predict if she would be feeling well enough to attend an event or have a sleep over. Hayley learned one by one who her friends were NOT!
3. Being chronically ill can be embarrassing.
The major reason people are embarrassment-prone is that they’ve set unrealistically high expectations for themselves and then judge themselves negatively when they can’t possibly meet those standards. We don’t have to look far to see the unrealistically high expectation and the negative self-judgment that are at work here: we don’t think we should be chronically ill. We live in a culture that repeatedly tells us we need not be sick or in pain. Millions of people suffer from chronic illness.
There’s a second reason that being chronically ill can be embarrassing. Society tells us we can all be healthy and fit, when in fact the state of our health should be a private matter. We keep many other intimate details of our lives private. Why not chronic pain and illness? The answer is that most people who suffer from chronic pain or illness don’t have the luxury of keeping our medical conditions private. They have to explain to everyone why they can’t do this and why they can’t do that; why we have to cancel plans at the last minute; why we have to suddenly sit down or leave school or a gathering early. And so, instead of keeping this intimate part of our lives private, they are forced to talk about it over and over and that can be embarrassing; especially for a teen-ager.
Most of us cherish the independence that comes with good health. We find it embarrassing to have to continually depend on loved ones to do so many things for us, from cleaning to shopping to supporting us financially.
There is no shame in being chronically ill. It was not a choice, there was no line up for this highway, no tickets for first come first serve.
This is just a small glimpse into some things that many of you never even give a second thought to! If you know someone who is chronically ill, touch base I can assure you they live in a very lonely world.
Toni Bernhard
Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. Her newest book is called How to Live Well with Chronic Pain and Illness: A Mindful Guide. Before becoming ill, she was a law professor at the University of California—Davis. Her blog, “Turning Straw Into Gold” is hosted by Psychology Today online. Visit her website at www.tonibernhard.com.
All my best to you,
Toni