Life with Post-Concussion Syndrome (PCS) is hard. Symptoms can get in the way of anything that requires you to use your brain: school, work, social life, and hobbies all find themselves on the back burner while the brain slowly heals. Here are some tips about how to cope, from those of us that have been there.
Trust yourself: PCS is real.
Not everyone is aware of Post-Concussion Syndrome – even some doctors don’t know that concussions can linger for so long. But rest assured, this is a real thing that happens to real people. The first step to recovery, after all, is admitting there is a problem. Don’t listen to the haters.
Settle in for the long haul.
PCS doesn’t get better tomorrow, but it does get better. Timelines for PCS are usually counted in weeks and months, not days. Along that timeline you will have good days and bad days, and often times you will make a big improvement, then plateau, and maybe even take steps backwards. Don't worry about it – eventually, the bad days will become the exception, not the rule. Try to take things day by day (even though it’s hard!), and remember that you can have a bad day, or even a bad week, and still be on the right track to recovery.
Parents: If your child is suffering from PCS, be their advocate
Parents, you can make a world of difference in the way you help your child suffering from Post-Concussion Syndrome. You can help manage physical symptoms like headaches and nausea, but you also play a crucial role in helping your child deal with the emotional and social hardship of having an invisible injury. As a parent, you know your child better than anyone and can help fight for them when they can't do it themselves. Whether it's working with their school to set up accommodations, not pressuring them to return to sports too soon, or simply believing them when they say they are struggling, your support can make all the difference.
In this PCS Resources video, the Lovett and Bond families share what they learned about concussion advocacy through their children's experiences with PCS. Also, hear from Concussion Legacy Foundation medical director Dr. Robert Cantu on the role families can play in their child's concussion recovery.
Find a strategy that helps you manage your symptoms.
Every case of Post-Concussion Syndrome is different, and what works for some won’t work for all. Find something that works for you, and stick to it. Be sure to keep trying new things, even after other strategies don't work. It's hard to know what will work until you try! Here are some things that have helped other PCS patients stay on the right track.
Ally is prepared.
Ally from Massachusetts has been suffering from PCS for several years. She makes sure to never leave home without her Concussion Kit – a small bag filled with sunglasses for when things get too bright, ear plugs for when things get too loud, an eye mask in case she needs a nap, and extra note pads to help her remember appointments and other things she’s likely to forget. Read Ally's story.
Quentin has an escape plan.
Quentin has been suffering from PCS for years, and he’s learned that he needs to have an escape plan to get out of social situations in case his symptoms get too intense. Working out his escape options before entering a situation gives him confidence to not worry about what will happen if his symptoms get worse, and makes for a quick exit so he can regain his composure when he needs to.
Scott is a nap ninja.
Scott from Scarsdale, NY has become an expert at grabbing some z’s when he needs to, especially in the afternoons when his symptoms tend to get worse. Finding a quiet place to lay down during his free periods and making a point to nap when he gets home helps keep his symptoms at bay, and gives him something to look forward to. Read Scott's story.
Georgia knows what to expect.
The worst part for Georgia from Boston was not knowing when her symptoms were going to ruin her day, so she started keeping track of when her symptoms would appear and get worse. She realized that some symptoms would come and go no matter what she did, while others could be nipped in the bud with some quiet time. Knowing what to expect helps her be prepared for today, and watching her symptoms gradually improve as time passes keeps her optimistic about tomorrow.
Esther changed her game.
Esther suffered a concussion that took her out of school for a year, and out of soccer forever. After a difficult retirement from the sport she loved, she turned to other sports to find another activity that she could focus on. Her new pursuits led to new friends, new opportunities, and a positive new outlook, despite her PCS. Watch Esther's story or read blog posts from Esther on losing the sport she loved, how you can spread awareness of PCS, what you don't want to hear while battling PCS, and adapting to daily life with PCS.
Noah has a buddy to confide in.
Noah from Hull, GA says that so much goes through your head while you’re living with PCS that it can feel overwhelming. A lot bothers you; you can feel hurt, depressed, not happy, anti-social. But you NEED to have someone you can talk to. Noah found that talking to someone about what is wrong and how he is feeling can help in unexpected, incredible ways. Holding in how you feel can push you to your limit and one day set you over the edge. Talking to someone can often allow the stress to roll off of you. Get a buddy and talk to them often! Watch Noah's story.
Are there coping strategies that have helped you live better with PCS? Let us know at firstname.lastname@example.org.