A Painful Reality

"The more we work together to foster healing and compassion, the better and more loving planet we will create."

A friend of mine recently added the following message to one of his social media pages:

"Its hard to explain to someone who has no clue.  It's a daily struggle feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (Anxiety, Bi-Polar, Depression, Diabetes, LUPUS, Fibromyalgia, Chrohns, MS, Arthritis, Cancer, etc.).  Never judge what you don't understand."

I too suffer from chronic pain and I have to agree with him. It doesn’t surprise me that I was the only person in our circle of friends who bothered to re-post.  I've long known that most people don’t understand what it is like to cope with pain on a continual basis.  Unless you have ever been in that situation it is impossible to know the insidiousness of pain. 

The friend who posted this has confided many things in me.  I won’t betray his confidences by bringing up any specifics, but I feel I can, in good conscience, point out that anybody who knows him can freely see.  He’s a young man who was formerly very active in many things, including sports. Since becoming less active due to chronic pain, most of his former friends have rejected him.  Even his family seems less than supportive.  The complaints others frequently cast against him concern his (perceived) “laziness”.  Some blame the medical cannabis that he smokes to alleviate his pain for making him lazy, rather than recognizing pain as his major energy drain. 

Sadly, I’ve heard other seriously ill individuals being criticized for being lazy.  If they also happen to smoke cannabis in order to cope with their condition, the knee jerk response toward them becomes “lazy pot smoker”. 

I recently overheard a conversation in which three healthy young men, all under the age of 35, were berating another man who wasn’t present.  The person they were gossiping about is at least 25 years their senior.  Almost three years ago he suffered a devastating neck and back injury.  His injuries left him in constant agonizing pain. While he awaited neck surgery, he slowly lost function of his legs due to nerve damage in his neck and spine. This man’s pain was so severe he was literally curled up in fetal position moaning from the torment.   After surgery he almost died from a staph infection.  

It took almost a year for the bone deep neck wound left behind after surgery to heal.  It finally closed less than 12 weeks ago. This was after it was discovered that his neck surgery had been botched. A large, needle sharp bone remnant had been left, lodged directly into his cervical spine.  This led to multiple wound infections, additional nerve damage, and other horrendous complications. Yet among the callous comments I inadvertently overheard spoken by some of those closest to him were that, “he expects everybody else to do everything for him”; “he doesn’t try hard enough”; and “he has just given up.” 

Given up???!!!   Its remarkable that the man has rehabilitated himself to the point that he has!  He can hold on to objects in order to stand up; he has devised a way use his socks to pull his legs over the tub and then manages to  give himself a shower.  He also grasps his socks to help him pull his legs in and out of bed and to get into his feet onto the leg rests of his wheelchair.  He can even grasp the kitchen counter, lean against his sink and wash his own dishes.  This once very active man is anything but lazy, as was being suggested.  He suffers from nerve damage, is weak, and experiences constant pain!  What’s more, he still faces another surgery to repair additional damage in his spine!  So I was entirely shocked by the callous words being spoken about him.  I had to blink away hot tears.

I could share example after example of others I know who suffer illness and are derided because of it, but I won’t belabor you.  Suffice it to say that, unless you’ve walked a mile in a pain sufferers shoes, you have no idea of how difficult life is for them, nor can you comprehend all the other areas of their lives that the pain affects. The reality of chronic pain goes far beyond the physical agony of the pain itself.  It does not just impact the area(s) of the body that hurt, it affects multiple other areas of a sufferer’s life.  

As illustrated above, when a person continues to suffer from chronic pain, their closest relationships may begin to erode.  Often those nearest and dearest, who are usually called upon to bear the extra burden when an infirm person is no longer independent, become resentful, and often critical.  

When somebody looses some, or all of their independence or usefulness, they also have identity issues they must deal with.  There also may be frustrations due to lack of control.  Caregivers often do not carry out tasks important to the infirm in the way that they would prefer; and when asked to do things in a manner more familiar to the ailing person they can tend to become defensive and stubborn.   When caregivers are unsupportive and unsympathetic it makes it even more difficult for the ailing person to trust their caregivers decisions pertaining to their person and their lives.

 

Even those who are still fully independent may suffer mood swings and display attitude toward caregivers.   Pain affects one’s mood, leaving the sufferer always on the edge. Just like a wounded animal, they can suddenly lash out at those who only wish to help, pain sufferers can become snappy and unpleasant.  It is difficult to be jovial and amiable while hurting.    

As for a pain sufferer's loss of energy and productivity, continuous pain slowly drains the sufferer moment by moment and day by day.  When pain also disturbs sleep, it really sap one’s energy because it becomes impossible to fully rest and recharge.  

Severe pain can also demand all the sufferer’s attention.  It becomes very difficult to concentrate.  Suggestions to watch T.V., read a good book, or distract oneself with a game or crossword puzzle are ludicrous when you hurt so bad you can’t even think straight.  Sometimes pain can even make it difficult to carry on a conversation.  If you doubt me, just try to carry on a conversation with a woman in advanced first stage labor! 

Even health care professionals tend to rationalize their way around their patient’s pain rather than acknowledging the impact it can have on their lives.  Unlike an infection, broken bone, surgical requirement, etc., chronic pain is an “invisible” illness.  With the abuse of prescription drugs, and especially pain killers, an issue focused upon in the nightly news, chronic pain suffers may find even their doctors are reluctant to help. 

I am so familiar with the plight and prejudice experienced by pain sufferers because I’ve experienced it firsthand.  I’ve suffered from chronic pain for many years.  Nobody seems to understand what I go through, or how I feel.  I have a close relative who has unleashed many angry words at me because I’ve can’t attend family events at his house.  I’ve told him again and again that the eight steep steps leading to his front door are impossible—pain-wise—for me with my arthritic knees.  I can get up them, its coming down that is impossible for me. Rather than accept this explanation, he casts angry words at me each time there is an event I fail to attend.  He has said I’m lazy, and accused me of preferring to smoking pot (which greatly helps reduce my pain level) with my friend, rather than attend his family functions.

I also have a close friend who has berated me for not being more active.  His theory was that, as I moved more, the pain would somehow magically vanish.  I tried his way for about two years.  Along the way I suffered a back injury and repetitive stress injury to both shoulders.  I also experienced a re-emergence of pain from an injury to my achilles tendon that originally happened when I was clipped by a horse around age 14.  I actually began to love exercising, but one can only tolerate so much discomfort.  Eventually pain from my back injury prevented me from carrying out my routine and I soon reverted to my more sedentary “natural” self.

I suffer greatly from arthritis in my knees.  This, coupled with neuropathy has greatly affected my mobility.  When not in my wheelchair, I must use a cane just to get around my house.   The neuropathy causes an annoying numbness in my feet and lower legs.  The numbness makes walking difficult because I can't feel my legs and feet.  In addition, I feel a constant overall ache throughout my body, just as one would feel with the flu.  But the worst part of the neuropathy is the frequent “lightning bolt pains”.   

Lightning bolt pains are sudden searing pain episodes come out of nowhere.  Without warning, a burning bolt of pain will flash down one of my legs, or sometimes arms.  Wherever the affected nerve pathway ends in my fingers, toes, or soles of my feet, it feels just like somebody holding a lit match to the area.  The area can continue to “sizzle” for anywhere from several seconds to a couple of minutes.  These episodes can happen many times an hour.

I’ve tried a variety of methods to cope with the causes of my pain including vegetarian diet, vitamins, herbs, acupuncture, and the aforementioned exercise regiment.  I’ve also resorted to the use of several pharmaceuticals.  In the end, the natural approach did little to help my pain (except for the acupuncture, which did help but was too expensive to continue).  The pharmaceutical approach leaves me feeling drugged and inebriated, not a pleasant state for me.  I don’t walk well.  The last thing I need is something that further impairs me! 

When the reality of pain can be so all consuming, why do others always seem to look down upon those who suffer chronic pain?  Why can’t they see us as more than just lazy?   It really demonstrates how lacking in compassion our society has become.

Often the individuals who point accusatory fingers toward pain sufferers are young, healthy, and have no idea what they are talking about. They have no idea how very difficult just getting through each day can be.  Let me clue you in on something: it is impossible to know the level of pain somebody is experiencing!  Pain suffers perceive that others do not like to hear about our sufferings, so we generally do our best to keep the full extent of our misery to ourselves.  You never know when there might be a pained grimace hiding behind that forced smile.  Until you have experienced ongoing severe pain, you have no right to disrespect us or count us as lazy. 

Another point, please don’t criticize them for smoking cannabis to alleviate their discomforts.  Medical cannabis is not drug abuse.  Cannabis is an amazingly helpful medication and it is much less inebriating that your standard pharmaceutical pain killers.  In addition, it is healing and life giving.  I personally know at least three individuals with severe disease who would not be alive today without it.   Finally, do not falsely attribute the lack of energy and motivation that accompanies pain and illness to “smoking pot.” Pain requires a lot of energy to endure.  If the pain is severe, there is often no energy left for other pursuits.

I thank the Goddess everyday for the medical cannabis that I smoke.  It does not impair me, but it alone addresses my lightning bolt pains.  It reduces their number, so that on some days I only have one or two episodes.  It also reduces the length and severity of the sizzling sensation.   It eases my overall achy pain and helps me cope with the arthritis in my knees.  It also enhances my creativity, helping me to write, draw, meditate, and engage in many other activities that significantly improve the quality of my life. 

I am sure that I will address the issue of medical cannabis many times during the life of this blog because it is a subject that I am very passionate about. But my purpose here today was not to talk about cannabis.

I want to remind those who misunderstand pain sufferers to have a little compassion and sympathy.  You never know when some tragic and untimely event could lead to your own suffering.  The understanding you extend toward a pain sufferer today may be paid back to you in the caring somebody extends toward you tomorrow. The more we work together to foster healing and compassion, the better and more loving planet we will create.

I haven’t forgotten those of you who suffer from pain.  My next blog will be a part II on pain that is going to include several useful techniques I have used over the years to cope. Until then, I'd like to leave you with this inspirational quote.  

"If someone listens, or stretches out a hand, or whispers a kind word of encouragement, or attempts to understand a lonely person, extraordinary things begin to happen."  ~Loretta Girzartis

Blessings and Peace,

Esmerelda