We have all experienced pain at some point in our lives. Many times pain is our bodies signaling us that there is a problem. Usually, the more uncomfortable we feel, the more likely we will be to get it evaluated.
There are two types of pain: acute and chronic. Acute pain comes on sharp and suddenly such as with a surgery, broken bones, burns, cuts, labor and delivery or dental work. This pain goes away after the initial cause, and then is no longer present.
Chronic pain can be caused by an initial injury or illness. It can occur without any body damage at all. This type of pain is ongoing and lasts for more than six months. Some of the causes of chronic pain are headaches, arthritis, cancer, nerve pain, back pain and fibromyalgia. It is often invisible to others because they will say “you don’t look sick.”
What most people are unable to grasp is how chronic pain can change every aspect of a person’s life.
On the first day of September, Chronic Pain Awareness Month, I posted an article about chronic pain and asked all of the women in my Facebook group to tell me if they live with chronic pain, if they could tell us their diagnoses, and what did they want the general population to know about living with chronic pain. I will sprinkle some of the answers that I received throughout this blog.
People outside a sufferer’s life do not know how exhausting being in constant pain is, how isolating it can be or how difficult that pain can make it to concentrate and think. One lady that has been in pain for many years wrote, ”I’ve had fibromyalgia for 20 years and was recently diagnosed with RA. The pain isn’t the worst part for me. It’s the inflammation and the fatigue that drive me nuts.”
Even waiting and hoping for a diagnosis can be a long and arduous task. It might take up to eight years for a true diagnosis. The diagnosis for my son came after he had been sick and in pain every day when he was eleven years old. His problems all started when he was born. It is a stretch for any of us without this pain to even imagine what the waiting and wondering is like. There are a multitude of tests, procedures, specialists, treatments and hospital stays before a diagnosis. It may be difficult, but it is important for us to remember that people are grieving over an active, healthy life that they knew before their chronic pain.
The pain patient must consider every act during the day and weigh it against the pain, rest and recovery. Every day is different and must be paced according to how the individual feels at the time. Another one of my group friends wrote this, “It is not knowing what the next day will bring. I never know what to expect. The fatigue is killing me.”
Those in chronic pain are constantly aware of the attitudes of others, their symptoms and their own complex feelings. The most challenging of these is the attitudes of others. They see pain through the lens of their own experiences with pain that could not compare to the ongoing pain in the sufferer’s life or how much their lives have been turned upside down and wonder if they will ever be pain free again. One woman in my group spoke about her sister having Multiple Sclerosis and Rheumatoid Arthritis. She has been suffering with unimaginable pain for 15 years. This is what she said, “There is so much going on with her organs that NO ONE would ever guess.” That is so true. How would anyone know that her vital organs are deteriorating? That is why it is imperative that we listen to them and make sure they are being heard.
The people with chronic pain want what we all want, to appear normal, so they change their behavior, and avoid letting people see just how much pain they are really in. This requires them to ‘hide’ behind a smile and put on a mask so that others do not feel uneasy. Please, don’t ever assume that they are pain-free when they tell you they are feeling fine. One of my willing participants in the group let us know how she felt. “People can stop saying 'it’ll go away' or 'you look okay' or people who think they are doctors and give advice. Those are my pet peeves.”
Research has shown us that there are other consequences to chronic pain such as how repeated exposures of painful stimulus will change the pain threshold and lead to a stronger pain response from less provocation. This is called ‘central sensitization.’ Another is that noise, crowds and other stimuli cause intense increases in sensitivity to pain. As the pain is skyrocketing, ‘brain fog’ is becoming worse. The term ‘brain fog’ refers to a symptom of other medical conditions that causes memory problems, lack of mental clarity, poor concentration, and inability to focus.
Their days are filled with changes and abilities come and go. Being able to stand up for three minutes doesn’t necessarily mean they can stand up for twenty minutes, or an hour, or even give you a repeat performance. Just because they managed to sit up for an hour yesterday, does not mean that they are able to do the same today. There will be days when they take a shower and have used up all of their energy for the day. Always respect that the person in pain is trying their best by sounding happy and looking normal. They are coping. My son told me a few years before he passed away that I should write a book and name it, I Am Not Sick Boy.
He never wanted anyone to know about his physical problems.
"Chronic pain does not forgive or wait for anyone." -Anonymous.
There is another important gift that we could offer someone in pain. That is patience. If you tell your friend “Why don't you just get on with it?” you are placing a guilt trip on a person with unimaginable pain, who has suffered terrible loss since becoming a chronically ill person, and who is still able to have the will to go to the party, the family get-together or just out to dinner with their friends. It is their body that is betraying them by zapping all of their energy and coping skills and forcing them to cancel a commitment at the last minute once again. Do not take this personally. Instead, always remember how blessed you are to be physically able to walk, sit, stand, run, dance and do all the things that you can do easily and how sad the patient is at having to cancel [again] due to severe pain, illness and disability.