I finally did it. I found the perfect analogy for chronic pain. Visible or invisible.
Since the break out of Covid in 2020, we were shocked and dumbfounded, gob smacked by the news as a nation. Just like when a person is being told their diagnoses for the first time. It is almost surreal. The notion of understanding and living with Covid (not the diseases itself) but rather imminence of its constant presence. Especially for a disease that is not well known. Naturally when you first hear of it, you hit Dr google and research it and like any one normal would. Many did this during the first months of the pandemic and unless you have a medical background, the more scientific the terminology the more hopeless, handicapped one is made made to feel. Your feelings pendulum from epic catastrophe to its not real. One thing you do clearly understand though is “there is no cure” you just must live with it.
You don’t tell people about your new diagnosis out of feeling ashamed or less than. And you push through the pain. At work, with family, with friends. Not directly looking at it makes you feel invincible so you stop researching and you repeat to yourself ‘its not real’ I can’t see it. It must be just in my head.
People were dying from Covid around us in the world whilst we lived in Australia with zero transmission putting our heads in the sand, believing we have crushed this beast! Denial.
But it is real and it makes itself present and demands your attention. You can’t move from the aching pain, you take more sick leave than any of your colleagues. People start looking at you with skeptical eyes wondering why you didn’t turn up on time to their events. “Maybe she doesn’t want to be here”. She is just lazy. You start to think I can’t hide this anymore. I need to start telling people to elicit any form of understanding. Covid-19 became the topic of conversation on our daily news reports. We were flooded with news about it to the point we became desynthesized. You start telling family and your close friends and they are very sympathetic but it doesn’t last long. They don’t want to hear that you are in pain, daily. They want to ask how you are and they want you to lie. Covid is made up by big pharma companies, it is not real. DENIAL. That is not to suggest it wasn’t high jacket by money making fear mongering media who would much rather make money off you watching their clown shows rather than offer real support in times of crisis. Or even a sound for truth. Did I just say that out loud. Truth and media in one paragraph. In this day and age one will find a theory online if they look hard enough.
We heard so much about Covid but we didn’t want to hear that there is no cure hence we became obsessed with finding a solution. May be a vaccine, may be medications are the answers to our questions. News reports were coming from all over the world identifying one type of remedy after another. You become desperate trying to look for a cure. You run to the government to doctor. What do we do now? We can’t work. Here more money, time off. It is going to be ok. Take the Vaccine you will LIVE through it. Denial.
You rally against doctors, media, anyone who would listen, why me? Why this disease? What about my family? What about my kids?
The government hands you out a payment to subdue people’s anxieties about what the future may hold. Taking the handouts makes you feel numb for a while. Just like painkillers but the pain always comes back. Just like covid. You would give it all back to have life the way it was. Anger…
Social media is flooded with ideas and home remedies to “help” people with chronic pain. Their targeted audience, a person with daily chronic pain, a sitting duck! No better victim to watch than someone desperate for a cure! A solution. Exercise, eliminate gluten, it’s in the food, it’s in the water, its in the coffee. Constant daily pain would drive anyone to try anything if they believed 0.001% chance of remission. Masks, social distancing, vaccine, ISOLATION. Covid is not shut down, people are still dying. Covid is still here. Transmission is imminent. Our kids look at us with dim eyes asking why they can’t hug their friends? And when they go to school the smallest of scars on their bodies makes them question whether they would be allowed to be back at school in case it would be ‘contagious’. We smile at their simple misunderstanding and innocence whilst deeply concerned about the messages they are constantly hearing and its effects on their mental health. Doctors and governments trusting that they will give us a solution to our daily struggles. We vaccinate, take the medications with millions of side effects hoping for some relief. Still pain. Still Covid. We bargain.
We feel alone. Although Covid has struck every corner in the world we feel alone. Chronic disease is everywhere we look but we feel alone. We go to drugs, sex, alcohol, binge Netflix. The medication becomes the problem. We Isolate and feel alone which leads to more medical problems such as depression and anxiety. A person with chronic pain takes on drugs knowing full well the side effects could be even fatal such as cancer or going blind. But the risks out weigh the benefits and we take the drugs because we sincerely believe we will be allowed to live our lives normal again. There is no normal again. It’s a new norm. The most hated phrase in the English language right now but an old familiar sentence to those suffering from chronic pain. Mental health becomes an adverse reaction to the pandemic. And now we have two crises. Suicide, lack of hope, Mental Illness from isolation AND Covid. You begin to find consolations. Obsessions with stats trying to ‘figure’ out if it is improving or getting worse. Blood test after blood test, doctor appointment after doctor appointment. PCR test after PCR. It is here to stay. There is no hope. Covid is not leaving no matter how many times we pray it away. The pain is never leaving my body. The virus is here to stay and we must LIVE with it.
I met with an exercise physiologist, Mike, who trained me for 8 months. Every time we met, he asked how I was and pending on my answer we would train accordingly. He didn’t expect me to lie. And if I did, I would pay for it because he would trust that I can do more exercise that day. So I always told the truth. I don’t feel good today. I would say, “I’m in pain…” There was something therapeutic about just saying those words to someone. Although I was paying him I felt he cared. My husband, God bless him, would ask me daily but I always felt guilty telling him the severity of the pain. I felt that he would take that to mean he had to do all the dishes that day or take the kids swimming. It didn’t feel good to let him know because although he was helping me in every possible human way, in reality I felt it was crippling me. It wasn’t until Mike said to me once, “it’s something you have to live with and adjust your life accordingly” I knew that! I was doing that! But I was not ready to accept it. I would pray for healing. I’m a firm believer in God and I needed to accept that this pain is serving a purpose in me. I needed to believe that my pain was not here to cripple but to make me better. Not a punishment for my sins nor is it here to alleviate others’ pain. I love the analogy someone once told me. When you’re in the dentist’s chair and you are asked: would you like anesthetic or the feeling that one day you will share your pain with someone to make their pain feel better? I would chose anesthetic every time!
The loneliness is still here, because the disease isolates the patient from people who don’t understand crippling, invisible daily pain. We still have covid. But we have each other. We have community, we have family and we have God. Isolation and depression occur when we refuse to accept we need all three connections to survive Covid and Chronic disease. Acceptance does not mean we give up hope. Hope does not disappoint1. IT is not hope in Government or doctors or even each other, all may lead to disappointment. Hope in something bigger than all of us. Hope that we are not here alone, and I take comfort that God does not work alone. Alexander Fleming did not ‘accidently’ find a cure for what we all thought were deadly diseases pneumonia, gonorrhea or even a septic fever. Today we easily administer antibiotics, an unheard of treatment before 1928 when Fleming discovered penicillin. My hope is in God who cures all my diseases2. This can become my purpose. My aim is to look at my Maker in awe and wonder and not on the storm. As a follower of Jesus I do not have a claim on chronic pain, I suffer. Daily. I struggle to love my fellow men and women who look at me with skeptical eyes because they can’t see my pain as they would see someone suffering on a wheelchair. I struggle with faith and I struggle with love daily. I can struggle through the cycle of anger to depression without finding my acceptance. I struggle. I am not exempt from that because I am Christian. As Philip Yancey3 puts it in his book, Vanishing Grace, “ Followers of Jesus have no claim on moral superiority; on the contrary, we come to God out of need and must constantly cry out for help.” We can not accept Covid or any other life threatening diseases without the lenses of purpose. I came, I lived and I died. Diseases may come and go and so will we. We all have a story. It is in the lines in between that we make our story resonate with others, our fellows of the human race. At which stage did death find me? Shock, Anger, Bargaining, Depression or acceptance. Death found me LIVING.
1: Romans 5:5 NKJV
2: Psalm 103:3 NKJV
Vanishing Grace by Philip Yancey Page 81