An Open Letter to Experts on Chronic Pain who Don’t Have Chronic Pain

Hi there, and thank you for sharing your expertise on chronic pain with me. Oh thank you, you look just fine too. Oh, you think that means I’m not suffering from pain? Well they do call it an “invisible illness” for a reason- yes; it was from that accident many years ago, the bones calloused around a major nerve causing an entrapment. You don’t believe me? You think I must be a malingerer? You’ve seen my x-rays and CT scans and are an expert at reading them, then I suppose.

Oh, you haven’? How silly of me, of course you haven’t!  I had no idea that your street knowledge and guess work was so astute! What was that, you say? Nothing is better than your favorite brand name over the counter medication? That will work? Well, I’m glad it works for you but I’m afraid that my doctor and I both agree that that medication is not strong enough for my pain and if I were to take enough of it to work I would be doing some serious damage to my stomach or liver. They do make stronger medication just for people with painful conditions like mine.

What was that? You think it’s an excuse to take strong pain meds? You think I am a needle craving back alley lurking junkie just shopping for meds, do you? Some kind of slobbering guttersnipe? Thank you for your kind thoughts, but I believe that medicinal information is between me and my doctor. I realize that you think that my doctor must be some uncouth pill pusher, perhaps from the very same back alley you imagine me slathering around in for my next fix.

Oh, I get it; you just don’t think I am trying hard enough to get better. I see what you mean. You think my pony tail is too tight or my hair is too heavy and causing these headaches? You think my breasts are too large and causing these backaches? That I should change my weight? Good Heavens! While I am flattered that you feel that my bosom is ample and my hair long and lovely, I assure you it is not the cause of the headaches, and my doctor hasn’t associated my backaches with my cup size. The weight is an unfortunate side effect of my medication and the unstoppable pain. Some people gain weight, others lose it uncontrollably. Oh, you think I should exercise more? I do what I can, but, yeah the back pain. My doctor said I better lay off that for a while. Yeah, I remember when I was toned and fit too, changing like this definitely wasn’t a conscientious decision, it’s what happens when you are in pain always. Toned and fit, those were the days.

Oh, the pain? Ha! Of course it is all in my head, that is where the pain receptors for the brain resides, you silly goose. And yes my headaches do reside in my head. Do correct me if I’m wrong, but I’m quite sure that is why they are called head-aches.

Tell, me, oh wise one (how I wish I shared your expertise on my condition), why you think it is perfectly fine for someone like you to come along and question my copious amounts of pain whilst never wondering about the pain of a cancer patient. Is it that you believe that cancer is the only thing that can cause serious pain? While I have the utmost sympathy for people that suffer from cancer, I don’t want to demean or belittle those who have serious pain and no cancer. You say I should just get over it? You think my pain is psychosomatic or somatoform in nature? I assure you it is not, and I assure you if I kept my medical records in my pocket I would be happy to share it with you, if it were your business of course. Which it isn’t.  And  unfortunately for you and my pocket, they are a little bit bigger than my grandmother’s photo album and I’m afraid I keep them safely stashed at the doctor’s office.

“Stash” Ha-ha, you don’t miss a thing do you. Yes I have tried Medicinal Marijuana. Yes, it does work for some people, but not for everyone. Strange to have to rely on a drug that helps so many that you can get arrested for. Medicinal marijuana comes in pill form, sprays, as well as the herb, but it doesn’t work for everyone.  Everyone is an individual, you see. Oh really? I have the exact condition as your co-worker’s neighbor’s aunt’s best friend, did I get that right?  They know of an herbal extract that will have me cured within two weeks? I assure you that would be nothing short of a miracle; I will definitely get right on that. I wonder if it makes your brain wonderful and smooth too, like yours appears to be.

Oh you think it must be lovely having all this time off to myself to do with what I wish, do you? Yes, having to make last minute cancellations on appointments and visits with my friends is certainly enjoyable, how I love to spend the day in the dark in bed with pain signals barraging my brain like an army attacking my nervous system, dead as a dodo, aside from the interruptions of retching my guts out. Yes, nerves, I see you caught that too, what a sharp one you are! It is true that the side-effects of constant chronic pain is to not only rattle the sensations but to rattle the nerves too and anxiety and depression are common acquaintances of chronic pain. It does put stress on the coping skills, you’re right. I’m sorry that my change in personality has disappointed you. I don’t enjoy being a nervous wreck either.

But you were talking about the indefinite vacation! It’s great being unable to hold down a job, having no money, not even enough to pay for medical procedures that might make one better. I’d love to be able to work, to have work friends and be able to afford to go to dinners and save up for vacations. In fact I’d be happy without all those things if I could just live a life of normal levels of pain, when things are working as they should and I’m not getting pain for no reason.

Oh the pain clinic you say? That pain clinic? Well sure I’d love to go there, looks like a proper spa it does. But my disability pension does not cover for such luxuries as that. Besides, my doctor said they are really like boot camps for people with newer injuries and their method would be not only ineffective but dangerous as well.

Oh but we mustn’t get your knickers in a stitch, life goes on. Oh, what, so I won’t take any of your suggestions and let you control my life (which I happen to know more about my condition than your 5 minutes of ideas) so you are saying that I like being like this, and my pain isn’t real and I am simply doing this for attention? Well I hope you have a good day then, and I’m sorry I wasn’t able to make it to your awesome party last week.

-N Pearson 07.2012