I have taken to calling PCS the invisible injury. My daughter has suffered from PCS for almost 8 years. However, her symptoms are not apparent. Those who meet her for the first time would never know that she has trouble focusing, constant headaches, and fights fatigue daily. Those whom have know her for a while cannot gauge how much pain she is in at any given time. She often does not have the energy to engage with her friends, even answering a simple text, and this has caused some of her friends to get annoyed. It has been frustrating as a mother as often I do not know how much she is struggling. Sometimes I get impatient with her and then have to remind myself that I have no idea of what it is like to live with a chronic condition. She is not a complainer (for which I am grateful) and often hides the extent of her symptoms, trying to push through them. Yet for me, I wish I could ascertain how she is feeling more readily because I am aware that it is also very frustrating to her as a patient to keep being asked, “How are you today?”.
My tip to caregivers first and foremost is to be patient. This is not an injury that has a linear recovery at all and it takes the brain time to heal. Try also to establish, with whomever you are taking care of, a type of protocol regarding when and how you “check-in” so you don’t get on each other’s nerves. As to finding treatment – never give up trying to find treatments. There are a variety of treatments available that may or may not help. You have to keep trying to find the one that does help. Do not listen to the neurologists who tell you there is nothing else to do, or dismiss the symptoms, or say that one just has to live with it. Keep advocating and researching. We went to three of the top NYC concussion treatment centers and were told by each one of them that there was nothing else they could do. One doctor told my daughter that she would never go to college – she is now in a Ph.D. program. Yes, she has sacrificed a normal social life as the energy she has to expend is given to her studies and has had to give up being an athlete on any level. Yet as the years have gone on, and she has found treatments that help, she is leading a more normal life. So the best tip I can give is DO NOT GIVE UP, there are myriad of treatments that can help.