May 3, 2011

Living With Chronic Pain

I was first diagnosed with degenerative disc disease (DDD) when I was 30 years of age. I had been suffering with debilitating back, neck, shoulder and head pain (without a diagnosis) since the age of 22 and so in a strange way, the diagnosis felt like a blessing. 

I actually believed that once I knew what I was dealing with  (once ‘they’ knew what I was dealing with)  then that would somehow make it easy enough to treat. I could not have been more wrong.  

DDD basically means that the padding between the spinal discs wears down much faster than normal  and for me this has meant 14 years of chronic neck pain and a dull throbbing headache that has haunted me relentlessly without so much as a week’s respite. 

Over the years I have spent a fortune on various treatments; including deep tissue massage, shiatsu, acupuncture (Chinese and Japanese), chiropractics, physiotherapy, reiki, cranio-sacral therapy, osteopathy, cupping, pilates, pain management clinic and rolfing. 

Each time I saw a new practitioner they would try to convince me that I’d be better within 6-12 sessions maximum, because ‘they’ knew exactly what was wrong with me, and exactly how to fix it. Each time, the diagnosis was slightly different, and each time, I would put my trust and my faith and every inch of my hope in this new stranger as I watched those 6 sessions turn into 12 and those 12 sessions turn into months, and sometimes years, until eventually this stranger became a friend who felt ethically obliged to refer me along the line to someone else whom they thought might be better equipped to help me.  

Over the last fourteen years, I have been endlessly prodded and poked, pummelled and jerked and I have laid face down on more massage tables than I care to remember. I have done stretches, worn a heel lift, swum laps, tied my legs together in my sleep, and sipped hideous Chinese concoctions and all because I hoped that this time, this new approach would take my pain away. 

At one stage I became so desperate that I actually went to a witch doctor because he claimed that he could remove the foreign entity that had attached itself to my neck (if I gave him $200 and an old piece of my clothing). I declined his offer but never stopped wondering if maybe he was the missing link in the chronic pain riddle that now defined my life. 

Chronic pain can make a sane person desperately crazy and your standards of normalcy are progressively lowered the more desperate you become for pain relief. Chronic pain is different to acute pain, even to the worst kind of acute pain because chronic pain wears you down with its relentlessness. I birthed two children without so much as a panadol for the pain during a 14 and 12- hour labour, because I knew that the pain would eventually end. With chronic pain, there is no end: it is like being in labour forever. 

What most people and most doctors don’t seem to realise, is the negative effect that chronic pain can have on a person’s mental health. 

Nobody can truly understand the enduring impact of chronic pain, no matter how much they have read or studied, unless they have experienced pain for an extensive period of time. For most people, pain is something that happens and then goes away. 

In other words, pain is generally something that a person can overcome both physically and mentally because of its limited duration. However, chronic pain never goes away and the mere acknowledgement of that reality can be extremely hard to take. 

In my experience, chronic pain has felt like a life sentence, a dark prison of which there is never any escape and the best possible solution has been to find a kind and understanding doctor (easier said than done) who can assist me to manage the pain. 

Over the years, I have endured some hauntingly memorable lectures from both lay folk and members of the medical profession who have told me in no uncertain terms that I am either imagining the pain, or that I am responsible for the pain because of what I am holding onto in an emotional capacity.

One G.P. actually told me that I had manifested my neck pain on an unconscious level because of unresolved childhood issues. When I told him that there was a genetic history of DDD in my family, he seemed genuinely irritated that I wasn’t willing to run with his Freudian diagnosis. 

All of these lectures have occurred in spite of the fact that I have enough x-rays, CT and MRI scans to wallpaper a small cottage - all of which would show the gradual (but obvious) decline of the discs that sit between my skull and the base of my spine. 

When I was finally referred to a neurosurgeon in 2009, he told me that I needed surgery to replace the worst disc in my neck (C5) with a small titanium cage because it would take the pressure off the nerve that was ‘causing’ of all this pain.

Surgery was my last chance in a long line of chances.

It was my last hope when every other hope had been exhausted. The surgeon told me that it made sense that nothing else had worked because the nerve was compromised and therefore, no matter how much work was done to relax the muscles, my pain would never get better until the pressure had been lifted off the nerve. 

I felt hopeful but somewhat reluctant to run with this simplified explanation and so I asked the surgeon in all honesty if he truly thought that surgery would make me pain free. He answered emphatically and without hesitation that it would.

It has now been 8 weeks since the same surgeon cut my throat and drilled into my spine and like everything else that I have tried and tested, I am now waking up to the awful reality that surgery has failed me.

After enduring 12 months on the surgical waiting list, I now feel physically violated and desperately angry that I allowed myself to be cut open, with such blind and unyielding faith. The thought that there are no other available options has made me feel more hopeless than I have ever felt in all of my life. All hope has been taken away and I now have to contemplate the rest of my life trapped in this continual cycle of pain. 

Perhaps the worst part about my disease is that you cannot see the way it attacks my body and so not even the medical profession can glimpse the nature of my pain. DDD causes my head to feel as heavy as a bowling ball so that it actually aches just to stand upright, but you cannot actually see that.

You cannot see the way my neck muscles spasm or the way it feels as though someone has taken a mallet to the base of my skull and swung it at me repeatedly, day and night, night and day, without so much as a moments reprieve.

You cannot see my disease and for the most part I try not to show it, and so nobody really understands how much I hurt or how hard it is for me just to be awake, just to try and function in the world. The only people that have really glimpsed the extent of my suffering are my two children. They have lived with this pain for as long as they have been alive, and that has not been easy on them either. 

Thankfully, I have at long last, found two very empathetic doctors who hand me my monthly script for pain medication without making me feel like a trashy pill popping junkie just trying to get her next fix with the tired story about back pain as her motive.

Nobody will ever know how shamed I have been by the medical profession over the years, by doctors who have treated me like I am scamming them for a quick high, by doctors who have refused me treatment and left me to suffer because of their moralistic positions, when I have needed them to ‘help me’ get some respite from this pain.

At times, I have felt so helplessly alone that the only thing I could think to do was to curl up in a ball and cry. 

I would have given anything for this surgery to work.

The thought of being pain free, of never having to rely on pain meds, of never having to wake up in tears because the pain meds have run out or stopped working, of living a normal life - they were nice thoughts, nice plans, nicer than anything else I could ever have imagined.

But now I have to face the fact that this is my reality. The surgery has failed me, and so I am going to need to adjust my thinking once again. I have decided to get some counselling and I am still going to try to cut down on the pain meds like my Doctor had originally suggested, but I am also going to face the fact that I might need some form of pain relief forever. 

I am grateful to have found two doctors who do not make me feel guilty or bad about that reality, doctors who treat me with dignity, empathy and respect.

In this sea of utter hopelessness, it feels comforting to have found them, especially when the negative attitudes of the medical profession have, overtime, taught me to stigmatise the issue of my own drug reliance, as though the need itself to be free of pain is a form of weakness or social inadequacy that somehow warrants negative judgement and disrespect. 

I openly acknowledge that the rate of substance abuse is much higher in sufferers of chronic pain and I know that without a good doctor to guide you, the road to relief can fast become a very slippery and problematic slope.

However, that is all the more reason why the medical profession should readjust its attitude toward sufferers of chronic pain.  I feel genuinely grateful to have my doctors, because not only do they treat me with dignity, but they are also invested in monitoring my pain levels and my treatment in order to keep me functioning and safe. 

If I could ask one thing of the medical profession, it would be that practitioners refrain from treating sufferers of chronic pain as though they are second- class citizens. Just because we are searching for some kind of reprieve from the constant cycle of pain does not automatically make us dope fiends or substance abusers.

To say that ‘pain’ will not kill you is all fine and well in theory if you are talking about acute pain, but chronic pain is insidious in its nature because not only does it wreak havoc on your body, but it also wreaks havoc on your mind. One must be extremely wary of downplaying the impact of chronic pain and those mental ramifications. 

The trick, I believe, is not to dwell on the pain, not to let it get you down. I am a sole parent of a 16-year-old boy and a 9-year-old girl and I study full- time at university. Even though the pain is always there, keeping busy helps keep my mind in a healthy place and it stops me from becoming a victim of chronic pain.

Perhaps with medication, physiotherapy and counselling I can overcome this debilitating cycle of pain and subsequent depression. Maybe, just maybe, there is still hope. I suppose it just looks different to the way that I’d imagined it. 


Anonymous said...


BS said...

This is a late response, since this post was written back in 2011.
I hope your pain has improved. Reading your post, I couldn't help noticing the 'elephant in the room'. Opiates! If your pain is still persisting, you could find an understanding doctor who is willing to prescribe you a low-dose, slow release opiate like Oxycontin. This is by no means a 'total' solution, but it will assist in reducing your pain. The trick is, is to work out a dosage regime such that you find relief for the major part of the day, but experience a couple of hours of pain so as not to increase your tolerance to the medication.
Anyway, hope this helps.