One of the first questions people with SUD ask when they seek support is this: ‘What is treatment like?’
Friends and family want to know the same thing. If their friend or loved one commits to a formal programme, they want to know what they’re going to experience while they’re in treatment.
But this question is inadequate. Sure, it’s a valid question. It’s not the right one, though. Instead, here’s the right question: ‘What’s the recovery journey like?’
That’s the right question for two reasons. First, treatment is only part of the process. Focusing on treatment alone does not account for the depth and breadth of the experience. Second, recovery is a lifelong process. That means asking about the journey is more appropriate because that’s what people in recovery experience: a journey, rather than a single event.
In June 2022, the APF published Patient Journey Map: Substance Use Disorder Treatment and Recovery Experience. The goal of the report was to collect and share information on the lived experience of people diagnosed with SUD who committed to – and completed – a formal treatment for substance use disorder.
What people who’ve been on the journey say
Researchers identified seven (7) distinct phases of the recovery journey, and called their organized and collated interpretation of the survey results The Patient Course Map. We outline the entire patient course map below. We’ll include details that can help anyone – a person in recovery, a person considering entering treatment, or friends and family of people in treatment/recovery – understand what the recovery journey is like.
The statistics reported in the study show both the diversity of experience and the commonality of experience among people with SUD. Nine out of every ten participants reported childhood trauma as a contributing factor to their SUD. More than eight out of ten reported SUD in their family. And the most telling statistic: 98% reported damage to relationships.
This part of the journey map explored the circumstances that led the individual to assess their own symptoms and seek treatment and support for SUD. Participants in the study, on average, indicated at least three separate events led to the ‘Aha! moment’ that caused them to seek treatment: pressure from loved ones, being tired of addiction, and referrals from the court system.
We’ll note here that outside pressure, from loved ones, for instance, is not always intense, ultimatum-style pressure. One respondent reported a friend of her dad’s simply said, ‘You don’t always have to live like this.’
That was enough to get her to seek treatment.
This part of the journey map explores the process participants experienced while seeking SUD treatment and support resources. Note: this part of the journey, in most cases, included significant barriers and difficulties.
During this part of the recovery journey, study participants identified pain points or circumstances that made this phase unpleasant. Pain points included waiting for a place in treatment, withdrawal symptoms, not being able to find the appropriate treatment, unsupportive family and friends, and inability to pay.
Participants reported that ‘knowing people care and knowing I’m not alone,’ were the most positive aspects of this phase of the recovery journey.
Now let’s take a look at how participants describe the beginning of their formal treatment experience.
Initiation of care
This part of the journey map examined the assessment process and the beginning of professional treatment and support. Fear, stigma, and learning about the presence of co-occurring disorders, and repeating their substance use history over and over during intake assessments were common challenges reported during this phase of the journey, while friendly counsellors and recovery peers were common bright spots in this phase of the recovery journey.
Treatment and recovery
This part of the journey map examined the various services accessed by study participants during their formal treatment and initial stages of recovery. Of note is that participants viewed previous treatment experiences not as failures, but as events that added to their overall inventory of recovery tools and skills. On average, participants utilised four different types of treatment services: addiction treatment, support groups, mental health treatment, and medication.
This quote from this section of the report strikes a chord: ‘The brightest spot was learning that I’m not the gangster, the monster, the bad guy I’ve been perceived as my whole life. That I’m really a good guy – and I really love people and helping people that’s my biggest thing. Getting to know myself, ditching a lot of my fears, having a stable environment and not being homeless – the main thing is getting to know myself and getting to know God.’
This part of the journey map examined the modifications to daily life that supported recovery and promoted long-term well-being. Participants reported that lifestyle changes play a critical role in the recovery journey: some changes were easy to make, while others were hard. Changes included revising friend groups, starting hobbies, exercising, and not going to specific places.
The most important lifestyle change participants reported was creating a recovery-friendly social network.
The last section of the study is ongoing support, also known as aftercare. This part of the journey map examined the supports and interventions individuals utilize to maintain recovery after the end of a formal treatment programme. On average, participants engaged in three types of ongoing service and support after formal treatment. The most common types of ongoing support included attending community groups, reconnecting with family and friends, volunteer work, and connecting with religion/spirituality.
For participants in the study who considered themselves recovered or in recovery, the bright spots of their experience included feeling healthy, feeling a sense of accomplishment, and restoring relationships that were damaged by SUD. Participants reported that reconnecting and rebuilding relationships with their children or parents had the most significant positive impact on their lives after treatment.
Five actions steps to better support people with substance use disorder
- Remove or eliminate barriers to treatment
- Require providers to engage in stigma awareness training
- Streamline assessments
- Individualised care and case management are essential:
- Screen for trauma and adverse childhood experiences:
We’re on board with all five of these recommendations. We know that when we work together to reduce the pain and hardship associated with SUD, we can improve the lives of individuals, families, and communities.
Lori Ryland, PhD is the chief clinical officer at Pinnacle Treatment Centers