“To not have your suffering recognized is an almost unbearable form of violence.”
This quote pretty much sums up what most people with chronic pain are feeling at this very moment. The suffering you feel inside is close to impossible to see on the outside. How many days a week, months through the year, or years in a decade can you tell you loved ones same thing: “No, still in pain.” or “Nope, still living in pain all the time” or worse hearing from other’s: “But you look so great!” I swear there were times in my darkest hours of chronic pain where I wanted to reply: “I know right? Better than you and you do not even have chronic pain!” Glad I never actually threw those words out but totally understand if some of my readers feel the need. Joking….kind of.
To not have your invisible illness recognized causes so much increased pain both physical and emotional. If it is not validated or recognized, you feel depressed, crazy, lonely, and begin to isolate yourself so that no one can cause you more pain. Hence, why in college before I went to the Mayo Clinic I really only went out with friends when we were drinking because that was one thing that for a few hours would numb the physical pain and I could actually say: “I’m good.” Never said what was really true: “I’m good because I’m drunk around people who are partying and at this second not thinking about pain. But come tomorrow, I’ll be back to me. Pained Jessica.” I was very lucky in the fact that I had my dad who did validate and recognize my chronic pain. He never once thought it was fake or I was crazy. He took me to every specialist, surgeon, and healer we could find. I do not believe what I had been going through truly hit him until he came to the Mayo Clinic Pain Rehab Center for family weekend. As patients went to their groups, our loved ones went to their own to learn more and have their own support as caregiver stress is exhausting at times. I got out of one of my groups early and rushed down to see my dad and through the glass I saw him crying. That was a huge moment for us. I felt more in sync and connected to my dad than I had in years. He got it. When I walked into the room it appeared that close to everyone was crying or had some tears in their eyes. That was the first real time I felt recognized in maybe forever. Whatever that class was, I sometimes wish I could send other loved ones there too. My dad sat next to the same young man for each class they had that weekend. The man was one of my friend’s husbands and he was there to learn how to support her better and manage the kids and everything that comes with caregiver stress. Months later, I would receive a phone call that this man committed suicide. My heart broke for my friend as I know how much she loved him and he loved her. They had two children. I talked to her on the phone many times and she was just lost: chronic pain, loss of husband (blaming herself) two kids, and alone. Chronic pain affects so much more than the individual. That is why it must be validated and recognized.
It is also the key reason I write this blog. Some of you do not have anyone that can literally look you in the eyes (if I knew how to work Skype) and say: “I have chronic pain. You are so recognized and I literally feel your pain. You can get to a place where I am today despite chronic pain. Chronic pain is not a death sentence. Here is your support. I believe you and your life will turn around.”
If you have a loved one who suffers from chronic pain or any invisible illness you probably have zero clue how to help. I get that. However, here is what you can do: VALIDATE AND RECOGNIZE that your loved one is suffering even if you cannot see the pain. It is there. Never make someone with chronic pain feel they are crazy. You do not have to understand it but you must recognize it.