Excerpt from How to Live Well with Chronic Pain and Illness by Toni Bernhard.
It takes courage to grow up and become who you really are.
—e. e. cummings
Before I became a member of the community of the chronically ill, I thought that young people—at least through their thirties—were either healthy (aside from the occasional cold or flu) or had a terminal illness. I had no idea that millions of young people live day-to-day with chronic illness. They suffer from symptoms that, while not necessarily life-threatening, affect every aspect of their lives: unrelenting pain, debilitating fatigue, shortness of breath or vertigo, damage to vital organs such as the lungs and kidneys. Many of them have spent a good part of their childhood and young adulthood in medical settings; some have undergone multiple surgeries.
This chapter focuses on the difficulties faced by young people with chronic illness, although much of it can apply to people of any age.
Being treated as if your medical problem can’t possibly be chronic.
In this culture, the words “young” and “acute illness” appear to go together, but “young” and “chronic illness” do not. Young people tell me that family and friends often treat them as if they can’t possibly have a medical condition that might last a lifetime. This leaves them feeling frustrated, hurt, and sad.
When young people are disregarded in this way, they may even begin to question their own perceptions: “Am I really in pain all the time? Everyone says it can’t possibly be the case, so maybe it’s all in my head.” This self-doubt can lead to self-recrimination and can seriously erode a young person’s sense of self-worth. Many of them have told me that the greatest gift a loved one could give them would be to say, “I believe you.”
In addition, young people face discrimination by the population as a whole, especially if their illness is invisible—as is often the case. Several young people have told me that they’ve been openly challenged when they park in a disabled spot, even though they have the required placard or sticker. (By contrast, no one has ever challenged me.)
If a stranger is rude to you in this fashion, the best response is to acknowledge to yourself that you feel hurt, take a deep breath, and then immediately turn your attention to taking loving care of yourself. Don’t let another person’s insensitivity make you question yourself. The problem lies with that person’s ignorance about chronic illness; it does not lie with you. Make a commitment to become your own unconditional ally. This is the essence of self-compassion. With practice, it can become a lifelong habit. Start by separating this person’s behavior from what you know to be true about yourself. In other words, you know you’re sick; you know you’re in pain. Let that be good enough for you.
It saddens me every time I hear about a young person who is chronically ill being challenged by other people. Everyone should be given the benefit of the doubt. No one is too young to suffer from chronic illness.
Being repeatedly told, “You’re too young to be in pain.”
I’m not young, so no one has said this to me. However, I’ve lost count of the number of young people who’ve written to me, saying that this is one of the most frustrating comments they have to listen to. Sometimes they’re even told they’re too young to have the very illness they’ve been diagnosed with, especially if it’s something that’s associated with being older, such as osteoarthritis. Then they have to listen to remarks like “No one your age gets arthritis” or “You’re too young to be in pain from arthritis.” These types of comments are a challenge for young people to respond to skillfully because they’re being told that they’re not experiencing what they are, in fact, experiencing.
Perhaps most destructive to a young person is being told by a doctor that he or she can’t possibly be seriously ill or in pain. At the end of one of my online articles, a young woman described having had this experience:
I’m only twenty-two and I had to literally beg my doctor to let me get an MRI. She kept telling me no because I was too young to have anything seriously wrong. She finally let me get one and we found out that I have juvenile degenerative disc disease and quite a few herniated discs. By the time I had my surgery, my surgeon said he couldn’t believe that I was able to wait as long as I did because it was so bad and I must have been in so much pain. I’ve already had one back surgery and I’m probably headed for a second one soon.
If you’re young and have been told by a doctor that your condition can’t possibly be chronic or that you’re too young to be in pain, do your best to find another doctor. If you’re being told this by family and friends, it’s good to remember that you might not be able to change their minds. It makes sense to try and educate them, but keep in mind that a recurring theme in this book is that not everyone comes through for us. When you feel disappointed by others, try thinking about it this way: it’s better to have two friends and family members who believe you and are interested in what life is like for you than to have a dozen who don’t.
Many of my friends dropped away when I became chronically ill. I’ve learned to treasure the few who’ve stuck around and the few who’ve newly entered my life, because I know they don’t question the chronic nature of my illness. I’ve learned to let the others go. This is an equanimity practice: working on accepting that people’s behavior will not always conform to your wishes and being content with those who are there to support you.
Get the book, keep reading, and learn how to live a liberated life while dealing with chronic pain and illness.