A Young Person’s Guide to Navigating Chronic Pain

So you’re in your late teens or 20s and have been diagnosed with chronic pain. Now what? I sense some of the overwhelming and intrusive thoughts in your brain. “I can’t even drink, but I have to live in pain,” “How could this happen? I’m only 20” and other variations of these types of questions race in your head. You start calculating how many years you’ll be living in pain. Half your life? Three-fourths? Two-thirds? Anything more than half is likely, and you’re terrified.

You start drowning. Drowning without any hope or possibilities in sight. You sit in waiting rooms for specialists and doctors, most often surrounded by those much older than you. You’re given strange looks. Maybe someone will ask why “someone like you” is in a place like this. You won’t know how to respond. You’ll look down and mumble something about having an appointment.

Navigating a diagnosis of chronic pain is never easy, no matter your age, race or gender. However, since being diagnosed with chronic pain and femoral acetabular impingement (FAI) at a relatively young age, I’ve learned that age can present a number of interesting and unique challenges.

You’ll need to cultivate skills, similar to those that anyone diagnosed with chronic pain needs to develop. You need to learn how to properly research various treatment options that may be suggested, how to effectively deal with insurance company and how to advocate for yourself and what you feel is best with anyone who may be on your treatment team.

If your diagnosis is very recent, do a bit of research on resources for chronic pain on sites such as the American Chronic Pain Association and the US Pain Foundation.

Challenges you’ll need to learn to handle:

1. “Aren’t you a little young to have chronic pain?”

I don’t know why so many of the people I interact with view chronic pain as something that only older people deal with. Chronic pain can affect anyone. Coming up with a concrete strategy to deal with this question, and questions of a similar vein, is vital.

Over the years, I’ve come up with a few answers for various situations — some sassy, some serious, some ridiculous. Here are a few suggestions, but make sure you feel comfortable saying what you end up choosing to keep on hand. It has to work for you.

• Actually, no, I’m not too young to have chronic pain. The stereotype of those with chronic pain being older is harmful to everyone involved.

• Well, I do love being stuck in a lot of waiting rooms, but yes, I am here because I have chronic pain (must be said with a sickening dose of sarcasm).

2. “You don’t look sick/like you’re in pain.”

If I had a dime for every time I’ve been told that I don’t look I’m in pain/sick, I could at the very least buy the latest iPhone every time the new version comes out. Unfortunately, I’m only paid for those statements in emotional pain — not a pleasant payment.

There is no universal look of “sickness” or “pain.” Just because you can’t see it written all over someone’s body doesn’t mean that it isn’t there. Sickness and pain aren’t always externally verifiable. Just like there’s not a universal look for depression or anxiety, there’s no universal look for being sick or in pain.

Just because you can’t see it doesn’t mean it isn’t real.

3. You can exercise and do other things, so you must not really be in pain.

Just because someone can still exercise doesn’t mean they don’t live with chronic pain. People living with chronic pain can manage their symptoms and do an extraordinary amount considering that diagnosis. Living with chronic pain isn’t the same as giving in to chronic pain.

Here are a few of my suggestions for when someone questions your pain because of an activity you choose to partake in:

• I still have good days where the pain is manageable. My body isn’t useless because of a single diagnosis.

• My body is extremely capable even with a chronic pain diagnosis.

• Exercising actually helps my chronic pain because it helps with blood flow and circulation. I have to be careful, but I can still participate in the activities I love.

Other things to remember: 

1. You’re young and you have chronic pain

Do not let anyone invalidate your experience because both are true, and you’re living in your body, not them.

2. Chronic pain is not the end. 

It may feel like the end of the world, but you can still thrive in this world despite this diagnosis.

3. You can still do the things you love. 

Just because you’ve been diagnosed with chronic pain doesn’t mean you can’t enjoy everything you used to. It may take time and adjustments to do some of your old favorite activities, but you can still participate in your passions.

You may be young and have chronic pain, but you can still live a rewarding and full life. If you have just been diagnosed, give yourself grace and time to deal with and accept the diagnosis. Learning to navigate the rough waters of being young and in pain is a process, and one that is never truly complete.

Winds and directions shift, and you’ll learn new tricks for adjusting the sails accordingly for years to come. It may never be smooth sailing exactly as you want it, but as the cliché goes, calm seas never made a skillful sailor.

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