Coping with PCS
Adjusting to life with Post-Concussion Syndrome (PCS)
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, sports and hobbies can become a struggle while the brain slowly heals. It’s difficult, but there are ways to cope to make your daily life with PCS more manageable. We’re here to help you through. This page is full of coping strategies and tips from experts and those who have suffered from PCS. It’s important to remember that every case of PCS is different, so a coping strategy that works for some won’t work for others. Hang in there and keep trying different methods until you find something that works for you.
1. 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, it is a real thing that happens to real people. More than 10% of people who suffer a concussion will develop PCS. Your recovery will become even more difficult if you have to waste your energy trying to justify your illness to those who do not believe you. Believe in yourself and know science is on your side.
2. Be patient: Recovery is not linear
PCS might not get better tomorrow, but it does get better. Timelines for PCS recovery are usually counted in weeks and months, not days. Along that timeline you will have good days and bad days, and often you will make a big improvement, then plateau, and maybe even take steps backwards. The ups and downs are normal, and eventually, the bad days will become the exception, not the rule. Try to take things one day at a time (even though it’s hard!), and remember you can have a bad day, or even a bad week, and still be on the right track to recovery.
3. Coping during COVID-19: You're not alone
The outbreak of the Coronavirus has made recovering from PCS even more difficult for some patients. Perhaps the medical services in your area are becoming overwhelmed and you're not sure if you can get your normal treatment. Perhaps the social distancing protocols are making an already isolating recovery feel even more isolating. Perhaps you're feeling heightened anxiety and stress. We want you to know we're here for you. Check out our webinar featuring medical experts and PCS patients designed to help you or your loved one manage PCS in the time of COVID-19.
4. Be honest: Open up to your loved ones
During PCS recovery, it’s critical to have a support system by your side. If you’re able to be honest about your symptoms and what you’re going through with close friends and family, they will be better prepared to be there for you. Noah Abrams suffered from PCS during his soccer season at Northeastern University. Opening up to his teammates, friends and family made all the difference for him. He says “there is no shame in admitting that sometimes things get so hard you can’t handle it on your own.” Read his story here.
5. Calm your mind: Try meditation
For an injured brain, stress can become harder to manage and may even trigger symptoms. Mindfulness and meditation can be a great way to promote brain health and well-being. After yoga, brain injury patients have reported feeling calmer and having improved sleep, emotional well-being, and physical well-being. James Schorn suffered at least five concussions during his high school lacrosse career. He developed PCS and uses meditation to stay positive and focused through his recovery. Hear from James in this video. If you want to give meditation a try, check out CLF Legacy Family Community member Dr. Shannon Albarelli’s free session for PCS patients here:
6. Switch it up: Explore new interests
When you’re struggling with PCS symptoms it’s easy to focus on all the things you can’t do. Your interests and activities might become too difficult and symptom-provoking. It’s challenging, but a great way to cope is to shift your gaze on what you can do, and work to explore new, low stimulation interests you wouldn’t have before. Esther Lovett wrote this blog about her PCS recovery and details how she turned to new activities after her concussion ended her soccer career, which led to new friends and new opportunities.
7. Be prepared: Keep the essentials close
Environmental stimulation from sights and sounds often increases PCS symptoms. Using tools like earplugs, hats, sunglasses or screen filters to reduce that stimulation can help you make it through the day without your symptoms spiking too high. Don’t be afraid of looking funny or standing out if you need special accommodations to reduce stimulation. Do what you need to do to feel better. Read Ally Crich’s story to learn how she built her concussion kit and why it never leaves her side. If you do get over-stimulated, it’s always good to have an escape plan. If you can map it out ahead of time, try to find a quiet space nearby where you can take breaks or a way that you can easily leave if you need to.
8. Don't push it: Rest is key
Resting after concussion and throughout your PCS recovery is key. It gives your brain a chance to heal and can help alleviate symptoms in the moment. It can be hard to know when to push it and when to pull back. CLF co-founder and medical director Dr. Robert Cantu offers guidance in this video. You can also learn from Gracie Hussey and Scott Cohen. Gracie shares here how she built breaks into her day to manage her PCS symptoms. Scott became expert at finding a quiet place to lay down during his free periods at school and writes in this story how his afternoon naps helped his symptoms and gave him something to look forward to.
9. Be hopeful: It will get better
Maintaining a positive and hopeful mindset can make all the difference throughout your recovery. It can be hard to cling to hope when the pain of your symptoms is overwhelming, but we want you to remember you are not alone. Check out our Concussion Hope page to watch dozens of encouraging messages from concussion sufferers sharing what helped them make it through. CLF communications manager Julia Manning launched an IGTV series to detail how a positive mindset and other perspective shifts helped her cope with symptoms. Watch it here.
10. Reach out when you need help
If you are struggling to cope and would like some emotional support, call the National Suicide Prevention Lifeline by dialing 988 or 1-800-273-8255 to connect with a trained counselor. It’s free, confidential, and available to everyone in the United States. You do not have to be suicidal to call.
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It is easy to feel misunderstood with PCS. CLF's Julia Manning gets it. She suffered from PCS for several years and opens up about the hardest parts, plus the coping strategies and treatment tips she picked up along the way.PCS Recovery Corner
Your PCS will get better, and recovery is possible. Holding on to that hope is key. Get inspired with video messages from dozens of others who have battled PCS.Concussion Hope Videos