Crossing over the lines

As we grow older, humans develop a deeper sense of perception. We realise that often what we see is not always what it is. It is only our perception of it. Life is not black or white; good or bad, true or false. It can reside in shades of grey. The ability to see both sides of the coin, cross the line, and look from the opposite side of the road is a gift that only age, and experience can offer.

In medicine, as with life in general, I have since learnt not to judge.

A young housewife in her thirties presents to the clinic with fever. She looks very ill and looks very uncomfortable as she is constantly shifting from one edge of the seat to another. Her hands are jittery, and her temperature is high. She tells the doctor that the fever has been on and off for the past month. After taking several over-the-counter anti-malarial medication without respite, she decides to go to the hospital. The doctor looks at her pale eyes, high bossing forehead, protruding upper jaw, thin body frame, and asks if she has sickle cell disease. The woman keeps quiet and continues to shift on her chair. Her silence translates to a much deeper story and so the doctor probes deeper.

The woman silently stands up and carefully removes her wrapper. Her entire buttocks and thighs are covered with needle marks. Her left buttock is swollen with pus oozing from a puncture site. The doctor makes a diagnosis:  Injection abscess from analgesic abuse. The young housewife, who has sickle cell disease, has been injecting herself with the common opioid, pentazocine.

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Sickle cell disease (SCD) is a genetic disorder characterised by recurrent acute painful episodes, the prevention and treatment of which is central to the management of the disorder. Opioids are often used in the management of these painful episodes; the extent of its use in the management of pain in this disorder is still an issue of debate in medical circles. Some physicians advocate minimal use of these drugs for fear of addiction while others believe that the use of these medications in the control of pain may result in pseudo addiction.

The pain from a sickle cell crisis is one of the most devastating things I have ever seen. It is unpredictable and can eat away at you physically, spiritually, and mentally. The woman with the injection abscess did not need to tell her story. Hers is a tale as old as time. Many people with chronic illness requiring long term pain medication have since crossed over the line of what is legal and what is not. A younger me would have launched into a tirade of admonition, preaching about the implications of self-medication, the consequences of drug abuse, etcetera, etcetera, etcetera. An older and I like to think, a wiser me, however, held her hand and told her that we would do our best to help her.

Because who are we to judge?

Certainly not me who cries at the sight of a dental needle.

Treatment of painful episodes in sickle cell disease is sometimes complicated by disputes between patients and staff and patient behaviours that raise concerns about analgesic misuse. The quagmire is that patient behaviours could indicate either drug seeking caused by analgesic dependence or pseudo addiction caused by undertreatment of pain.

When you hear about someone having an addiction, what’s the first thing that comes to mind? Smoking? Alcohol? Sex? Drugs? It’s true that more and more people are becoming addicted to alcohol and drugs, especially opioids. But while we might know what an addiction is, have you ever heard about pseudo-addiction?

Before we set out what pseudo-addiction is, let’s be clear about what real addiction is, as this term can mean a lot of things to a lot of people. Addiction “is a primary, chronic, neurobiological disease, with genetic, psychosocial and environmental factors influencing its development and manifestations. It is characterised by behaviours that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm and craving”.

In contrast, pseudo-addiction is quite a new concept developed by pain specialists in the 1990s to describe desperate drug-seeking that is caused not by true drug addiction, but by the undertreatment of pain. In other words, the conduct of patients showing pseudo-addiction imitates the behaviour of an addicted person. A person with unrelieved pain, i.e., one who is undertreated, might present physical signs and symptoms which may seem like drug-seeking behaviour or physical withdrawal. They may try to increase their dose illegally by getting the drugs without approval or turn to street drugs. They also might complain, act aggressively and even lie to get another prescription. The fact is, pseudo-addiction looks a lot like addiction – but it is not. When pain is properly controlled and effectively treated, these drug-seeking behaviours stop, hence confirming pseudo addiction rather than true addiction.

To further confuse matters, it is often very difficult to distinguish between addiction and pseudo-addiction because both are superficially similar, and patients differ when it comes to pain. ‘Man A’ will complain of a ‘mild discomfort’ while in the end stages of cancer while a ‘Man B’ will scream his head off when he is getting a stitches for a minor cut (after analgesia o!). One child will nurse her swollen hand silently at the peak of sickle cell crisis while another will shout the whole ward down. We are all built differently and so is our tolerance to pain.

So, which is it? Are the patients abusing medication because of drug dependence (meaning they have become so used to the drugs that they cannot function without it and so need higher doses all the time) or are we underdosing them, in other words, not giving them the adequate dose thereby forcing them to source for the drugs elsewhere and resorting to injecting themselves?

Another argument physicians use is that reports in the literature of substance abuse by SCD is on the increase. This is however counteracted by many systematic reviews which show that the rate of drug abuse by SCD patients is not different from that of the general public.

Despite the arguments, I believe the solution are twofold: First, treat the pain adequately and secondly, reduce unauthorised access to opioids. From this patient, I only demanded one thing: where she obtained her injections from. She told us of her two regular suppliers: retailers at a pharmacy in a popular market in Kano. The injections were often delivered to the woman’s house, via a delivery company, concealed in a loaf of bread. Yes, you heard right. A loaf of bread. And no, her family had no idea of what she was doing to herself.

The drug suppliers were reported; sadly, that’s the most we could do. Last I heard, their shops are still open. C’est la vie.

The woman went on to have several surgeries including series of wound debridement and skin grafts. It took nine months of hospital admission and gruelling treatment before she could sit again, let alone walk properly. Unable to cope with stigma of a wife with sickle cell injecting herself with drugs, her husband divorced her. She now walks with the aid of crutches and takes pain medication only as prescribed. Her’s was a long road to recovery.

Whether, addiction or pseudo-addiction, this is a woman who lost her husband and custody of her two children due to pain. Crossing over to drug abuse was never her intention.

It is what it is.