Stigma, Misinformation in the Methadone Patient Community

The topics of stigma, judgments and misinformation are nothing new when it comes to discussions on methadone maintenance treatment (MMT), with patients having long faced stigma from many different angles. Oftentimes, misinformation and judgments go right along with it.

But over my time as a methadone patient, I've noticed that those judgments and bits of misinformation are not only coming from those unfamiliar with the treatment, but at times directly from within the MMT patient community itself.

Just this past week I happened to run into someone I met during the time that Mr. L and I were staying in the local homeless shelter. He also happened to be struggling with his own addiction at the time. At this point, however, we hadn't seen each other in about three years, and over the course of those three years I have come a very long way. Let's just say that three years ago I was admittedly looking, well ... let's just say rather unkempt.

This article was first published on Studio L. You can read the original here.

Despite the fact that I was standing maybe 100ft from the clinic waiting for the bus with several other patients, one of the first questions out of his mouth was "So, are you still 'on the drink'?".

I answered "yes," and I immediately saw the look on his face changed. It turned to an odd, but familiar mixture of pity, shock and a touch of sympathy. He said, "Wow ... long time," followed up quickly by, "What dose are you at?" I answered, telling him, "I'm at 130mg right now..."

...and there it was again. He said no words initially, but his facial expression was more than clear. That look of shock, slight disbelief, and a dash of pity was once again strewn across his face. Then he spoke, commenting on how "high of a dose" that is for me -- as if he somehow knew all the details about my personal history, drug use, and tolerance, among other things (spoiler: he doesn't. He also happens to have been on methadone nearly as long as me, and at one point was dosing above 150mg). And, guess what? That's one of the politer reactions.

Dose Comparisons

There are a variety of factors involved when it comes to the proper dosage of methadone. There is no one "correct dose," as every patient is different. For those unfamiliar with MMT, or the average amount of the drug that is used to treat addiction, here is some information to help put it into at least some perspective.

A review by the General Accounting Office looked at 24 MMT programs in the United States, determining that the 'lowest effective dose for stopping heroin use is 60mg/day," before adding, "the use of low-dose maintenance (20-40mg) to be inappropriate.' It has also been shown that methadone is more effective when doses are above 70mg/day, and that doses are directly related to opiate use.

Having said that, every patient is different. Unique details such as past drug use and tolerance, among other things, all factor into determining the most effective dose for a patient.

Yet among my fellow MMT patients, I have encountered a hesitancy toward higher doses. On many different occasions I have had others react to hearing my methadone dose with a look of shock, followed up by some sort of comment like, "wooah," "really?" "THAT high?" "how do you even stay awake?" or different comments on my body type, size and height.

It's as if there is some very inaccurate rumour circulating that unless you are a 200 pound man, you couldn't possibly be on a dose above 100mg or have any sort of tolerance. Wrong! Oh, and no matter what my dose is, you are not entitled to just openly comment on my body, or anyone else's for that matter. It's rude and unnecessary, regardless of whether or not you think what you are saying is coming across as complimentary.

I certainly understand that when a patient hears a dose higher than what they might need, they might consider it to be unnecessary or too high if they are unaware of the different factors involved. Patient 1 could be stable at a dose of 75mg, and patient 2 requires 125mg to achieve stability. Neither one is wrong or excessive. Patients' needs vary, and we methadone patients need to be supporting one another, regardless of the required dose.

Treatment Length

When it comes to the length of time a patient should remain in MMT, this again varies. According to Health Canada's Best Practices on Methadone Maintenance Treatment

"It is not possible to determine an optimal duration of treatment for all individuals."

Many MMT programs allow for patients to remain in treatment for as long as they are benefiting from it, meaning long-term or lifetime treatment is possible in some cases. Studies have shown that this is most beneficial for the patient; the greater the length of time a patient spends in MMT, the greater the treatment outcomes. Conversely, shorter lengths of MMT have been tied to poorer outcomes in treatment.

But once again, there seems to be a noticeable hesitancy towards longer term treatment. Sure, it is certainly understandable that we'd all like to be in a good place, weaned off the methadone and back to "normal" all in the shortest period of time possible, but that is not always feasible. Plenty of us know that we will need to remain on methadone for a long period of time if we wish to remain free of opiate use and in a healthy state.

But here's the thing: there isn't anything wrong with that. Some choose to participate in shorter term treatment, while others continue to require the benefits of methadone for many years.

The length of time a patient has been on methadone is another aspect of treatment I have noticed compared and criticized among patients. Just like dose, length of time in treatment can elicit some negative reactions. Mentioning a treatment length of several years can sometimes end up with your fellow patients giving you a look of pity. Other times, it elicits comparisons to their own treatment length and how much shorter it is and better off they are. It's as though there is somehow an unfounded negative association with longer treatment lengths. Is there some unspoken rule that the fastest one off methadone wins? No, definitely not.

It is fantastic that some patients are able to obtain success through low dose, shorter term treatments. However, that is certainly not the case for a large number of patients, and they do not deserve to be made to feel as though they are "worse off," not as strong, or given looks of pity or sympathy.

Of course, this is not at all reflective of the entire MMT patient community, as the majority are extremely supportive and informed about their chosen treatment. Yet it is still an issue. We all have different treatment plans and goals, and we are all simply trying to recover. Rather than displaying noticeable aversion and sympathy to those of us who require higher doses and longer treatments, be supportive and encouraging. We have all been through enough hell with our addictions, let's at least support each our during our recoveries.

Sound fair? I sure think so.

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Studio L is a freelance writer living in Southwestern Ontario. She is a recovering IV drug user, methadone patient, and harm reduction advocate, and covers these issues in her blog.

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