If you’ve just been handed a diagnosis of a chronic illness, your head is probably spinning. From understanding what the heck your illness even is, to managing your medications, controlling your symptoms and explaining your condition to friends and family, there’s no shortage of new things to deal with following a difficult diagnosis. And while the topic of living with a chronic illness can span the length of many books (and it does!) here are a few of the major things you can expect to face in the next days, months and years.
Friends, family and strangers probably won’t get it.
When Jenni Prokopy, founder of ChronicBabe.com, was diagnosed with fibromyalgia at the age of 25, this was one of the things that quickly became very clear to her. As much as you probably want your mom, dad, best friend and boyfriend or girlfriend to understand exactly what you’re going through, it’s really hard for people who don’t have a chronic illness to understand what it’s like.
This is especially tough for young people, because you’re less likely than someone older to have peers who have experienced trauma, injuries, pain or chronic illness, says Prokopy, simply because you haven’t lived as long.
“But you don’t look sick” is a phrase you’ll become way too familiar with.
If you don’t look sick — which is the case 96 percent of the time — people may have a hard time believing you are, says Toni Bernhard, author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How to Live Well with Chronic Pain and Illness: A Mindful Guide. And this “you don’t look sick” mentality can make strangers lash out in ways you never imagined you’d have to deal with.
They just have a hard time wrapping their heads around the fact that yes, young people can be chronically ill, and no, you won’t be cured anytime soon.
“Young people get challenged or people get angry with them if they don’t give up their seat on the bus or subway to someone who is older than them, but they may not be able to stand for long enough to take the ride,” says Bernhard.
It doesn’t help that chronic illness is a term usually only reserved in people’s minds for older adults, even though 9.53 million young adults in the U.S. are living with a chronic disease or disability and research shows that the number of young people living with chronic illnesses is steadily growing.
It’s not that people are trying to be rude or insensitive, they just have a hard time wrapping their heads around the fact that yes, young people can be chronically ill, and no, you won’t be cured anytime soon.
You might have to rethink your career plans.
You know that 10-year career plan you had all figured out the second you started college? You might have to rethink it if the job path you’re on is one that demands long hours that don’t leave enough time in the day for self care, or require grueling physical work that will make your symptoms worse, says Prokopy. But want to know the funny thing about life plans? Whether it’s our career, our home or our partner, things rarely turn out exactly as we imagined they would — even if we don’t get sick.
“Whether you get a chronic illness or not, whether you get disabled or not, you never know what’s around that corner,” says Prokopy. “That thing you’ve been planning for may not happen anyway for a variety of other reasons that are all out of your control.”
Instead of freaking out about your career, take some time to think about your goals, and how you may be able to shift them and still do work that makes you feel like you’re kicking ass. For Prokopy, that meant accepting that her goal of working as an international reporter living out of a backpack probably wasn’t a good idea for someone with fibromyalgia. But starting her own company that allowed her to write from home and still have time for her doctor’s appointments, the gym and meditation? That was something she could do.
“There are workarounds; there are alternatives. You can do incredible work that helps people, that is satisfying and beautiful, but that does not necessarily fit the image in your mind about what you thought your life was going to be like,” she says.
Mourning is part of the process.
When your plans get derailed by a chronic illness diagnosis, you have to deal with the loss of so many things, including the person who you were before your diagnosis. Just like grieving the death of someone close to you, when you’re mourning the loss of your former self, you’ll go through the five stages of grief: denial and isolation, anger, bargaining, depression and acceptance, says Prokopy.
“I think a lot of people forget that becoming sick and losing the image you had of yourself is an enormous loss,” she says. “That’s a loss of the magnitude that many people equate with the death of a loved one.”
Instead of fighting against your body, give yourself the time you need to grieve. “Acceptance is a really crazy-cool kind of thing,” says Prokopy.
You’ll probably be tempted to blame yourself.
In our culture, we’re constantly bombarded with media saying that if you just take proper care of yourself, eat right, exercise and minimize stress, you won’t have medical problems, says Bernhard. But the reality is that chronic illnesses, such as chronic pain disorders, autoimmune diseases and genetic disorders, aren’t your fault.
“It’s not your fault that it’s happened to you, whatever age you are.”
“We’re in bodies and bodies get sick. They develop pain conditions, bodies get injured, and it can happen at any age,” says Bernhard. “It’s not your fault that it’s happened to you, whatever age you are, and blaming yourself serves no constructive purpose, all it does is make a difficult situation worse.”
Instead, work on treating yourself with compassion. Think about someone you love very much, and how you would react to them if they told you they were diagnosed with a chronic illness. You probably wouldn’t berate them for bringing it on themselves, for starters.
“When you begin to accept, with compassion and care for yourself, that this not the life that you particularly wanted, it’s not the one you ordered up, but it’s the one you’ve got,” says Bernhard. “From that point you can say ‘OK, what are the possibilities? What can I do?’”
Life will be a balancing act.
Taking care of yourself will always be important, but you shouldn’t let your life be all about researching your illness, managing your medications and going to doctor’s appointments, says Prokopy. It’s important to find time for the things you love doing, or your illness will consume you.
“You still have to go dancing, you still have to date, you still have to wear cute lipstick,” she says. “If your whole life becomes about medications and doctors appointments, your life is going to feel like such a bummer. It’s really important to find balance.”
You’re going to figure it out.
If you’ve just been diagnosed with a chronic illness, you probably feel a sense of urgency to learn everything there is to know about your condition and feel normal, like, right now. But it’s important to take a pause, slow down and let yourself adjust slowly. Understand that it’s OK to give your diagnosis some space to breathe, says Prokopy.
“Just because you put a name to something doesn’t mean you have to devote every minute of your life to figuring it out,” she says. “It’s important to be reminded that you’re going to figure it out, you’re going to build your team, you’re going to teach your family and friends what you need and how they can support you, but all of that is going take some time.”
Article originally published March 22, 2016.