3 Vitally Important Things People With Chronic Illness Wish Their Loved Ones Knew
In terms of illness, chronic pain, and those we hold dear, one size does not fit all.
In this article, we will look at the main 3 things most chronic pain sufferers want their loved ones to know about them. The advice and examples of personal experience are given by author Toni Bernhard J.D. of Psychology Today.
1. The grief we feel over the life we lost may constantly reappear.
Serious illness is one of the biggest stress producers in life. It is similar to other painful losses such as separation in a relationship or the loss of a loved one.
Grief arrives without notice and is always unexpected. At one point we can feel as if we’ve made peace with the soul-crushing loss. And then, at another, we can be overwhelmed by heartache and sadness.
“A simple interaction can trigger it: For example, I thought I was done grieving about my lost career. It’s been over a decade since I had to stop working due to illness. Then, one day, I ran into a former colleague who described all the changes that have taken place at the law school where I taught. To my surprise, a wave of grief overcame me, and I had to work hard not to break out in tears in front of her. This happened even though, if I recover, I don’t plan to return to my old job. It’s a thing of the past.
The grieving process I’ve gone through as a result of chronic illness has been one of the most intense of my life. Odd as it may sound, it’s been more intense than the grief I felt when my mother died. She lived across the Atlantic and we rarely saw each other. She had a long, good life. I was sad to lose her and I grieved, but it was not as intense as the grieving I’ve gone through over the upheaval in my life due to chronic illness.”
2. Sufferers can feel as if they’re letting you down even though you’ve told them they’re not.
“I have two close friends whom I try to see each week. Both of them have told me that if I’m not feeling well enough to visit, I should cancel and should not feel bad about it. And yet, whenever I have to cancel, I feel as if I’m letting them down—even though I believe them when they say that they don’t want me to feel bad,” Toni says.
Sometimes, when we feel like we’ve let our loved ones down, we may apologize for being unwell even though it isn’t necessary.
“I find myself apologizing to my husband, my children, and close friends for being unable to join in activities with them, even though they’re not expecting me to go beyond my limits and don’t want me to,” Toni continues.
I’ve decided that it makes me feel better to apologize. It’s my way of saying to them, “I know that my inability to do a lot of things and the unpredictability of how I’ll feel on any given day is no fun for you, either.”
3. Chronic illness can trigger feelings of shame.
Toni wrote about embarrassment in an article called “Are You Embarrassed?” There she says:
“The primary 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 should not be sick or in pain. In the United States alone, 130 million people suffer from chronic illness.”
“My loved ones accept my illness, and yet I occasionally still find myself embarrassed in front of them about the fact that I’ve been sick for so many years,” Toni shared.
“Sometimes guilt creeps in because I can feel like I’ve let them down. There’s no rational reason for me to feel guilty. None of my loved ones has ever said anything to me to suggest they think I’ve let them down. Still, I experience guilt, the painful feeling that I’ve been bad. Buddhist teacher, Jack Kornfield, says, “The mind has no shame.” He sure was right! I hope you’re able to hold his comment lightly and even laugh sometimes at your shameless mind.”
Another reason for embarrassment while chronically ill in addition to societal views that value health and physical fitness, is that it can often feel that one’s health condition should be a private matter. A big portion of our lives we keep private; so, the question is, why not illness and chronic pain? Unfortunately, most people don’t have a choice in the matter. We have to let our family and friends know why we cannot do certain things with them, cancel plans last minute, or need to suddenly rest or go home early. Instead of keeping all of this private, we’re left with no choice but to talk about it, which can cause us to feel shame.
Also, many of us find it embarrassing to have to constantly depend on our family and friends to do so many things for us, whether it is housework, grocery shopping, or giving us a shoulder money-wise.
“I know many chronically ill people who have been forced to move back into their childhood homes because they’re unable to care for themselves or can no longer afford to live independently. Having to tell others that you had to move in with your parents can not only be a source of embarrassment, but worse—shame,” Toni concluded.
Thanks go to all the kind souls who have done their research about their loved ones’ medical conditions and keep on supporting them in any way they can.
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