"You don't look like you're in pain" and other clueless statements

We are our own group, humans that live with chronic pain. Some of us have a disease, with an official diagnosis and others have a "syndrome" or a "condition" that can be diagnosed or at least defined by our medical history and symptoms. Another group of us have symptoms and medical history, yet no diagnosis at all. Then there are those of us who have multiple diseases, syndromes and conditions that have overlapping symptoms that cause us chronic pain.The unifying issue is that chronic pain is not something that is being "cured" at this time in medicine. Since it isn't "curable" it can be extremely difficult for friends, family, co-workers and the general public to understand. This leads me to the statements often made by others in response to those of us living with chronic pain when we respond to "How are you?" with anything other than "Fine"
                                         "Great"

         -or any response from us that is easy to just move on from  in continued conversation. 



So we answer truthfully, even just a little bit with "Not great"
                                                                                               "My ______ is really hurting"

      -or any other response that lets them know that we are not at our best and we still have a disease, syndrome or condition that causes us pain.


HERE IT COMES! Wait for it.........

"But you don't look sick?!"
                                           "You don't look like you're in pain...." 

              "You always ________" (fill in the blank with your "favorite" negative statement)

                                           "How come you don't get better?"

"You are always complaining"

                                           "You are sick all the time!"
                                                                                            and

- "________________________" insert the last CLUELESS thing someone said in response to you!

YES, this is extremely frustrating, and can often cause me to cry on the spot! Crying doesn't help the situation and often makes it worse because some people actually think I can "cry on command" to generate more sympathy! I don't know where people get the idea that ANYONE would be that manipulative and spend so much energy to make everyone only "think" they are in pain all the time. Perhaps the individuals who think that people who  have chronic pain are "faking it" have known someone in the past who was very manipulative? Maybe one of their parents or a friend of the family? I can see that if one had experience with an alcoholic parent or an aunt with an drug addiction then attention seeking, manipulative behaviors may have influenced how they view others that have a chronic condition. Can that really account for all of the clueless statements we hear from the people in our lives? I don't think so.

Another possibility I have considered is a basic emotion, FEAR. Do most humans believe that if you get sick you can be cured by modern medicine? The cure will not be too complicated, take a pill to get better is popular.  At the worst, undergo chemotherapy or radiation or surgery or all three to be cured. So what happens when your loved ones and your coworkers find out that you cannot be cured? You may take pills, but they don't cure you. You may have surgery (I have had 2 surgeries so far) and still not be cured. I have friends that have had over 30 surgeries and still have multiple chronic pain conditions they cope with daily. I believe it is too scary for others to find out that you can get "sick" and not be curable. They know we are not "contagious" but somehow knowing that chronic pain can happen and it's cause may not be curable. The human brain loves to categorize and build connections between information, it is a basic way our memory works. Imagine the "list" of illnesses in your brain, and connected to that list are the  "cures" or "treatments" to solve the problem of having an illness. 

EXAMPLE LIST

Chicken Pox-  Avoid completely with vaccine
Bacterial Infection- Go to doctor, get prescribed antibiotics
Flu Virus- Get the vaccine, hopefully avoid the flu. If you still get the flu, go to the doctor 
                for an anti-viral medication, rest and drink fluids, recover it 10-14 days.
Rotator Cuff Tear- Rest, anti-inflammatory prescription, physical therapy.
                              If not healed, schedule surgery to "fix" the problem.

Then one day, you wake up and KNOW you have a Flu Virus again! You do the same thing you did last time, and after 3 weeks you are still achy, exhausted and nauseous. The doctor examines you, does blood work, gives you another anti-viral medication and nothing helps. Your symptoms wax and wane, yet never get better. After seeing several other doctors and specialists, you are "diagnosed" with Chronic Fatigue Syndrome (CFS) based on being exhausted for more than 6 months and having a minimum of 4 out of 8 primary symptoms of CFS. You ask your doctor, how do you treat CFS so I can get better and be "myself" again? The doctor explains that you can try antidepressants, sleep aids, therapy, exercise, and a handful of alternative treatments that can help you feel better. However there isn't a cure for CFS that will make it go away for good. BOOM, your life is forever changed! 

WAIT A SECOND! This doesn't fit with the LIST example! A person's mind wants to reject that this syndrome can't exist! If you can't list it as an illness, then list it's cure next to it, we don't want it to be real. Humans would rather assume that anyone with CFS must be faking it or that they "just want attention" when they are still exhausted after having been diagnosed for months, maybe even years. If a person has never had a chronic illness it is very challenging for them to be open to understanding what it is like physically and particularly emotionally to live.There isn't a magic pill to take it away. If there is no cure, the person realizes that they have to CHANGE and do things DIFFERENTLY from that point on in their life, THAT IS THE SCARIEST PART for humans. Change is scary, and when it is your only option, it is the scariest! I think that fear is what makes people not listen when we say we "are not that great today" after they have asked us the predictable "How are you?" They just move on to the next question, change the subject or say something clueless,
"You don't look sick?" or "You don't look like your in pain!" 

Next post....What would we rather hear in response from our family an our friends? (I don't think we can expect much from the general public, but let us help our dearest humans learn how to respond with acceptance, love and kindness to our condition(s).