I thought this was an insightful blog by author Toni Bernhard that may help others understand the extra burdens the young affected by Chiari face-
The Extra Burdens Faced by Young People with Chronic Illness
Young people who suffer from chronic pain and illness face tremendous obstacles. Post published by Toni Bernhard J.D. on Mar 04, 2014 in Turning Straw Into Gold
From years of writing about chronic pain and illness, I’ve learned that young people carry several extra burdens, especially when their disability is invisible (as is more often the case than not). This piece focuses on young people, although some of its points apply to people of any age, depending on their circumstances.
- Young people are treated as if their health issues can’t possibly be chronic.
I hear from young people almost every day who’ve read my books or articles and write to me about their day-to-day challenges. For many of them, at the top of the list of those challenges is the fact that other people simply don’t believe that a young person could possibly suffer from a condition that might be chronic.
When young people are treated as if their condition can’t possibly be chronic, not only do they feel disregarded, but they may begin to question their own perceptions and judgment: “Is my body really this sick and in pain? Everyone says it can’t possibly be the case, so maybe it’s all in my head.” This questioning can lead to self-recrimination and can seriously erode a young person’s self-esteem and sense of self-worth.
This ignorance about young people with chronic illness has other consequences. 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. A young woman with multiple sclerosis told me that someone spit on her when she didn’t give up her seat to an older person on the subway.
I feel frustrated and sad when young people tell me that they’ve been challenged by others in this way. No one is too young to suffer from an invisible disability, and everyone should give others the benefit of the doubt.
- Young people are repeatedly told: “You’re too young to be in pain.”
Countless young people have written to me, saying that thiis is one of the most frustrating and hurtful comments they have to listen to. No matter what their diagnosis, they’re continually told that they can’t possibly be in chronic pain at their age. Imagine how hard it must be to respond skillfully to a comment like that.
A 2013 study by the National Research Council and Institute of Medicine (NAC/IOM) showed, not just that Americans are getting sicker, but that young Americans are getting sicker. We need to raise awareness about the fact that chronic pain and chronic illness can strike anyone at any age.
I have a few comments on these first two burdens—comments that I’d like to address directly to young people.
First, regarding strangers who are rude, in my view, the best response is to immediately take care of yourself by not allowing their insensitivity to make you question yourself. The problem lies with their ignorance about chronic illness; it does not lie with you. Try to separate the person’s response to you from your response to yourself. In other words, you know you’re sick, and that should be good enough for you. It takes practice, but it’s worth the effort.
As for family and friends who say your condition can’t possibly be chronic or that you’re too young to be in pain, of course, you should try to educate them. But, in the end, not all of them may be receptive. Many of my friends dropped away when I became chronically ill. I’ve learned to treasure the few who’ve stayed with me and the few who’ve newly entered my life because I know they don’t question the chronic nature of my symptoms. I’ve worked on letting the others go. I feel better when I’m able to be okay with people sometimes disappointing me and to be willing to be content with those who accept me as I am.
- Young people worry that they’ll never find a romantic partner.
Living day-to-day with an unpredictable medical condition makes it hard to sustain regular friendships no matter how old you are. It’s even harder to find romance. This is an ongoing worry for young people who are chronically ill. Many relationships don’t get past the first date. A young woman with Lupus recently wrote to me about a dinner date she’d had. The evening was going well, but when the guy 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 all together.
When I got sick, I was fortunate to have a committed partner who took that “in sickness and in health” vow seriously. It’s a sobering thought to reflect on how unlikely it would be for me to find romance were I young. That said, it can happen if an understanding and patient person enters the life of a young person who is chronically ill. It helps to think of creative ways to meet people. One woman told me that she met her fiancé online through a dating site (be sure it’s a legitimate one). She said that the two of them had become so close via their back and forth emails that, when they finally met in person, it mattered not a bit to him that she was disabled.
- Young people often can’t complete their education.
College is usually a ticket to brighter employment prospects. But when chronic illness strikes, young people are often forced to drop out of school.
When I served as the dean of students at the law school at U.C. 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 that would do the trick.
But soon, he lost his ability to take care of his daily needs. Some days he couldn’t get out of bed at all. This meant that he not only had to miss classes, but he couldn’t get to the grocery store to buy food. It became increasingly clear that he could no longer live independently. And so, after completing 3/4 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.
Young people with chronic illness often have to think outside the box when it comes to their education. This can be very difficult to do when a person is already struggling day-to-day with not feeling well. Hopefully, a dean of students or the Disability Services Office on campus can help with brainstorming and with creative solutions, such as moving to an extended program or taking some classes online.
- Young people must sit by and watch others their age participate in activities that are out of reach for them.
A few months ago, I read an article in The Atlantic that was written by the wife of a 33 year-old-man who’d been diagnosed with the autoimmune disease, Ankylosing Spondylitis. (The link is here (link is external).) 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 33. I probably am still considered in a lot of people’s eyes [to be] 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 tell me about their once-active lifestyles as hikers or marathon runners or social activists or yoga instructors. They’re frustrated, and sometimes they’re very 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: “It’s not your 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. It takes effort, but it’s well-worth it.
- Young people may be stigmatized by others.
When I was in grade school, all I wanted was to fit in or, at least, not be noticed. There was a boy named Alan in my 6th 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 both with 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.
- Young people are burdened with worries about the future.
Of course, people of all ages and health statuses occasionally worry about the future. But young people who are chronically ill have years of health-related worries ahead of them—worries that are likely to include: 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?
I encourage young people to talk to friends and family—even doctors—about these issues. The more information they can gather and the more support they have, the better equipped they’ll be to plan for the future.
Chronic illness imposes an extra burden on the young. The challenges I’ve discussed make an already difficult life even harder. My heart goes out to these young people and their families, especially their parents who often become their caregivers.
© 2014 Toni Bernhard. Thank you for reading my work.