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.
Being isolated from others your age.
My heart ached for the mother of a chronically ill young woman as I read this comment she posted at the end of one of my online articles:
The alienation of friends has been very painful for my daughter. She feels so alone and I don’t know how to fix this problem. If something happens to me, she has no one and I worry every night. I wish her friends would be true friends and comfort her and spend time with her.
Being isolated from peers can be one of the most traumatic consequences of chronic illness in the young. The ability to interact with others their age offers welcome relief from the constant focus on their heath, even if it’s just chatting about a favorite reality TV show. In addition, hanging out with peers — comparing interests, discussing likes and dislikes — helps young people form their identity and prepares them to blossom as adults. If you’re young, I hope you’ll keep reaching out to others — in person or online. There may be some disappointments in store for you when you do this, but one good friend can make a world of difference in your life.
Having to watch other young people engage in activities that are out of reach.
A few years ago, I read an article in The Atlantic that was written by the wife of a thirty-three-year-old man who’d been diagnosed with the autoimmune disease ankylosing spondylitis, which causes inflammation of the spinal vertebrae. In the article, she quoted her husband describing how difficult and polarizing it was to be with people who weren’t sick:
It’s, like, I’m still only thirty-three. I probably am still considered in a lot of people’s eyes youthful enough that I shouldn’t have to deal with thinking about this kind of stuff. I feel like my parents were still partying and drinking beers [at 33]. This is the age my Dad was when they had me. I don’t think [he] was worrying about what [expletive deleted] pills he was going to take or not take, you know what I mean? They were like, “We’re out of Budweiser.”
Many young people have had to give up active lifestyles as musicians, marathon runners, social activists, yoga instructors. They’re frustrated and sometimes they’re angry. Always, they’re sad. Worst of all, they tend to blame themselves for their inability to be active. I tell them over and over that it’s not their fault. I also encourage them to focus on what they can do and to look for others (online or in-person) who have similar interests.
Thinking outside the box can help. There may be activities you never considered before: macro-photography, where you need not leave your own backyard; joining an online arts or craft group, where you can learn from others and post pictures of your work; helping others from your phone or from the internet. If someone had told me I was going to become a writer from my bed, I would have said, “You’re kidding, right?” Yet here I am, about to have my third book published. If you like to write and can’t find a publisher, self-publish! Make “think outside the box” your mantra. The internet can be a great resource here.
Finding it impossible to complete college.
Higher education is generally a ticket to brighter employment prospects. But when chronic illness strikes, young people are often forced to drop out of school. I’ve received dozens of emails about this. Here are two samples: “I was unable to get my BA because of the unpredictability of whether I’d be able to attend classes on any given day”; “I was two-thirds of the way to my PhD when crippling pain forced me to drop out of the program.”
In addition, many students must work part-time to help defray the costs of a college education. Young people who are chronically ill may not be able to do this. They already have two “jobs”: the job of being a student and the job of taking care of their health. Even if they’re able to keep up with their classes, they may not be able to add part-time work to their lives. This circumstance in itself can force young people to drop out of school.
When it comes to higher education, if you’re young and chronically ill, once again, think outside the box. Treat this contemplation as part of the workload of that job of taking care of your health. Maybe you can find a dean of students or a counselor at your campus’s disability services office who is willing to brainstorm with you to come up with some viable alternatives, such as moving to an extended program or taking some classes online.
When I served as the dean of students at the law school at UC Davis, I tried to help a young man who’d been sick with what the doctors initially thought was an acute viral infection. When, after six months, he still hadn’t recovered, he was given the diagnosis of chronic fatigue syndrome. He was a dedicated student and was determined to get his law degree. When he and I realized that he could no longer keep up in his classes, I put him on a four-year program, which extended his studies by a year so that he could take a lighter class load. We thought this would allow him to complete his law degree.
Soon, however, he lost the ability to take care of his daily needs. Some days he couldn’t get out of bed at all. As a result, in addition to having to miss classes, he could no longer get to the grocery store to buy food. It became increasingly clear that he could no longer live independently. And so, after completing three-fourths of the units toward his law degree, he had no choice but to withdraw from school and move back in with his parents, who lived in another state.
I felt so bad for him. Little did I know that eight years later, I’d be given the same diagnosis and be forced, in effect, to withdraw from the very same school.
Having trouble finding work and dealing with the financial fallout.
Young people who are chronica
lly ill worry about their ability to compete in the job market with those who are healthy. There are federal and state antidiscrimination laws to protect those with disabilities, but there are subtle ways for employers to skirt those laws when deciding whom to hire from a large applicant pool.
Accompanying this obstacle is an ongoing concern about finances. Even young people with good health insurance have to shoulder the costs of copays. And many nontraditional treatments that provide symptom relief, such as acupuncture, aren’t covered by insurance. Having to allocate so much money for medical expenses can diminish a young person’s quality of life. As one young woman told me: “Even when my chronic condition is under control, the debt from it is always there.”
Being stigmatized by others.
Think about the burden that a chronically ill child must bear. When I was in elementary school, I got upset if I had a cold and had to miss a field trip. Imagine having to miss weeks of school at a time and not being able to participate in extracurricular activities. Additionally, such children may be stigmatized by others and suffer from terrible embarrassment.
When I was in grade school, all I wanted was to fit in — at least, not be noticed. There was a boy named Alan in my sixth grade class who suffered from asthma so severe that he missed weeks of school at a time. When he did show up, everyone knew “this is the kid who’s always sick,” and we treated him differently because of it. There was certainly no fitting in, no anonymity for Alan. He was stigmatized.
I realize now how terribly hard this must have been for him. He had to deal with both his illness and with his peers treating him as different. I hope he’s had a good life, filled with love and understanding from family and friends. I wish I’d been compassionate enough to have been one of those friends.
Facing the possibility of not finding a romantic partner.
Living day-to-day with a limiting, unpredictable medical condition makes it hard to sustain any friendship, no matter how old you are. It’s even harder to find romance. This can be an ongoing source of stress for young people who are chronically ill. They often have to severely limit how often and for how long they can be out and about, and this affects their ability to meet potential partners.
If they do meet someone, the relationship may stall in its tracks. A young woman with lupus recently wrote to me about a dinner date she’d had. The evening was going well, but when her date found out that she wouldn’t be able to go to a concert on the weekend because she was scheduled to get chemotherapy, he lost interest in her altogether.
When I got sick, I was fortunate to have a committed partner who took our “in sickness and in health” vows seriously. When I reflect on my limitations, it’s hard for me to imagine that I’d be able to find romance if I were young. It’s a sobering thought. I may not get regular treatments, as does the young woman with lupus, but my illness severely restricts my ability to engage in activities. For example, if I wanted to go to a concert, the show would have to be during the day, be close to home, and last no more than two hours. What are the odds of that being the case?
And those criteria don’t cover everything that would factor into whether I’d be able to attend or not. My symptoms are so unpredictable that, even if I agreed to go to the concert, when its scheduled date came around, I might be too sick to go. Cancelling plans at the last minute (especially plans that involve expensive tickets) is not conducive to beginning a romantic relationship.
On a positive note, romance can blossom if an understanding and patient person comes along. If you’re young and chronically ill, try to think of creative ways to meet people. One woman told me that she met her fiancé online through a dating site. She said that the two of them had become so close as a result of their back and forth emails that, when they finally met in person, it mattered not a bit to him that she was disabled.
I used to be skeptical of online dating sites, but I know four perfectly matched couples who met this way. They’re people about whom you’d say they wouldn’t need the internet to help them find a partner. These sites turn out to be a very efficient way of finding people who share your interests, your values, and your life circumstances, including having to live with chronic illness. They’re worth considering.
Deciding whether to have children.
A young woman in her middle thirties wrote to me saying that she’d been chronically ill for ten years. She was facing the question of whether or not to have children and wanted to get my opinion. She wasn’t the first person to ask me about this. I’m not comfortable advising young people on these matters; so much depends on the nature of their illness and what kind of support system they have in place. Nevertheless, my heart aches whenever I get asked, because this is a question I never had to face. Well, almost never.
When I was twenty-five and pregnant with my son, I developed severe back pain. It was so debilitating that it became a major factor to consider when my husband and I decided to have a second child. In the end, we adopted a three-year-old girl from Korea. Now I cannot imagine any other child as my daughter. I raise this to focus, again, on the value of thinking outside the box and being willing to come up with creative solutions to whatever dilemma you’re facing.
If caring for a child is more than you can handle, maybe you can be a second mother to one of your siblings’ children. I’ve met two chronically ill women who’ve done just this. When I was a young child, my aunt’s daughters were already grown and so she became an active part of my life, taking me on outings, lending a compassionate ear to my teenage problems. It became one of the most important relationships of my life.
Being worried and scared about the future.
People of all ages and health statuses worry about the future occasionally. But young people who are chronically ill have a lifetime of health-related worries ahead of them, worries that can escalate into fear: What will happen to my health in the years to come? Will my condition gradually worsen? Will I become more and more restricted in my activities? Will I be able to support myself? Will I be able to live independently, or will I become increasingly dependent on my family?
If you’re young and chronically ill, I encourage you to talk with your family, friends, doctors, even a trusted counselor, such as a teacher, about these issues. The more information you can gather and the more support you have, the better equipped you’ll be to plan for the future.
Being young and chronically ill is hard enough without taking into consideration the difficulties raised in this chapter. My heart goes out to these young people and their families, especially their parents who often become their caregivers. I’ve raised two children. I know how uneasy I felt every time one of them had an acute illness. I can only imagine how hard it would have been had one of them been chronically ill.
20
Maximizing Your Chances of Success at the Doctor’s Office
You may not control all the events that happen to you, but you can decide not to be reduced by them.
— MAYA ANGELOU
I’VE HAD my share of unsuccessful experiences with doctors, including being intimidated by them. Yes, this former law professor can allow herself to get intimidated by doctors! Finally, after many years of being chronically ill, I’m happy to report that I’m doing better in this uncomfortable setting, mainly because I’ve developed several strategies to help maximize my chances of success at the doctor’s office.
Think of the doctors and the staff as working for you, not vice versa.
I’m aware that this is an oversimplification of the legal relationships involved here, and I’m not suggesting that you order the doctors and the staff to do whatever you want. That said, I find it helpful to remind myself that they work for me in the same sense that an attorney or an accountant or a hairdresser does. I’m paying them for their expertise and their skill, even if the money goes through my insurance company. They are here to serve me, not vice versa.
Due to a combination of factors, it can be a challenge to maintain this perspective.
First, you’re in their territory — it’s their turf. Second, it can feel as if they have all the knowledge and all the power, even though you may know more about your medical condition than they do. Third, you have to put on that nightgown-looking thingy that makes you look like a child. Fourth, you may be at your weakest in the doctor’s office because the trip to get there, followed by the typical waiting times — first in the waiting room and then in the examination room — can take its toll even if you’re having a relatively good day.
With my illness, I have to add to these four the fact that sometimes I’m too sick to sit in the examining room chair while waiting for the doctor so, as soon my vital signs have been taken, I lie down on the examining table to wait. When the doctor enters the room while I’m in this position — with that silly gown on — it’s hard to feel as if this person who is towering over me works for me!
To help me remember who works for whom, as I sit (or lie) waiting, I often repeat to myself: “He works for me” or “She works for me.” I also practice mindfulness by paying attention to what’s present in my environment — the sights, the sounds, the smells. Doing this keeps me from focusing on any anxiety I’m experiencing about the upcoming interaction. After all, I can’t be paying attention to what’s presenting itself to my senses and, at the same time, be worrying about the future. If my mind wanders from the present moment to stressful thoughts about the appointment, as soon as I become aware this has happened, I repeat “He works for me” or “She works for me,” and then return to bringing all my senses to bear on what’s going on around me.
Consider taking someone with you.
Before I got sick in 2001, I had no idea that my husband could accompany me into the examining room. Now he comes with me whenever possible. No one has ever questioned his presence.
How to Live Well with Chronic Pain and Illness Page 12
