What RRMS Taught Me About Addiction
I was diagnosed with an autoimmune condition called relapsing-remitting multiple sclerosis in the fall of 2021. MS means my immune system is slowly attacking the myelin sheath, which coats the synapses in my brain, causing them not to fire as well. This results in neurological symptoms like fatigue, sensitivity to heat, and sensory perception issues (for me, a pins-and-needles sensation on the right side of my body). Relapsing-remitting means my symptoms come and go.
Despite not being in substance use recovery myself, I've never struggled much with perspective-taking with my clients. Both of my parents are in recovery, I have now worked in this field for over 10,000 hours), and I like to think that empathy is one of my skills. But learning to live with my own chronic condition has included a surprising number of parallels.
I wanted to know everything right away.
When I was first diagnosed, I understandably had a lot of questions. How did I get this disease? Is it genetic? Is there anything I could have done to prevent it? Am I going to die? Is there anything I can do to prevent that? What exactly is happening in my brain and body? How is this going to affect my life?
Thankfully there are answers to each of these questions, but they are a bit more complex than I wanted them to be on day one. I think it's natural to want to understand as much as we can when something threatening is happening. Still, my impatience and the complexity of neurological conditions didn't mix well.
Our clients often come in equally as eager for answers to these same questions. A big part of early treatment for substance use disorders includes psychoeducation about the disease.
Specifically, the answers are:
A person gets this disease by accidentally rewiring their brain's reward circuit and stress response.
Yes, it's genetic, but not 100% (meaning, not all genetically predisposed people become alcoholics, and not all alcoholics were genetically predisposed. Early childhood trauma greases the wheels).
Regarding prevention, yes: protective factors such as education and abstinence or careful moderation can keep someone predisposed from developing a substance use disorder.
Substance Use Disorder can be a fatal disease if not managed, yes.
Yes, death from the disease can be prevented. Millions of people around the world live successfully in recovery every day and reverse the physical damage caused to their body and brain.
Neuroscientists are learning more every day about what happens in the brain and body during addiction. Still, the short answer is physiological dependence and hypofrontality.
In my case, the answers are:
I probably got MS when I was an adolescent and contracted the Eppstein-Barr virus. It's a fairly common illness in kids and, for most, does not later cause MS, but it can trigger an autoimmune response.
There is some genetic risk of being more predisposed to MS, but I don't know anyone else in my family who has it. I was much more likely to have become an alcoholic, actually. Plot twist!
Some vitamin deficiencies might have made me more susceptible to MS, but prevention isn't an exact science yet.
I am going to die, but not from MS. It's a progressive disease, meaning it will get worse over time, but it is not fatal.
With luck, my daily medication will prevent or delay any serious disability.
I'm still figuring out how this will affect my life. So far, it means avoiding the brutal Oklahoma heat and keeping stress low.
"It's different for everyone" is my new least-favorite phrase.
There's a massive amount of variability when it comes to how people live with multiple sclerosis. Many people look completely normal, and you would never guess that they have any sort of disease. Others use mobility aids like canes or wheelchairs. While this variability is understandable, it's not very helpful when I'm trying to picture my life 30 years down the road. Should I climb a bunch of mountains now in case, one day, I won't be able to? If the prognosis is bleak, I just want to know.
Similarly, there are countless ways to live with a substance use disorder diagnosis. Many must remain abstinent for the rest of their life from all mood-altering substances and be very careful with prescribed medication. Others find they can use other substances recreationally but avoid the ones that got them in trouble. Still, others may be able to use their substance again in moderation many years later without returning to abuse.
At first, I thought discovering that there are many, many ways to live in recovery would be liberating for my clients starting their recovery journey. Change contains a lot of grief, and I figured that finding out that you might have options about what this looks like for you would be a good thing. But after hearing for myself "everyone's different" for the millionth time, I realize it might just be adding a layer of uncertainty, not possibility, for folks who are already just trying to get their bearings in a whole new world.
There are a LOT of treatment options.
A while back, I was talking with a client at our outpatient agency about starting treatment for their substance use disorder. When they started telling me that they didn't have the money and couldn't be gone from work that long, I realized they thought I was talking about a private 3-month inpatient facility, the kind in Malibu that they'd see advertised on TV late at night. They had no idea that outpatient treatment not only existed in their community but had comparable success rates with inpatient facilities at a fraction of the cost. Another client told me recently she's tried to quit many times but can never get through the withdrawal symptoms and the cravings. She'd never heard that she could (and should) detox safely in a hospital setting and then start daily medication to manage her cravings. These things are second nature to me as a clinician in this field. Still, I understand why most people in the community don't know where to go when they want to get help: therapist offices are purposefully discreet, and when's the last time you saw a Vivitrol commercial on TV?
When I first heard "MS," I immediately assumed I would need brain surgery. I'd never heard much about the disease anywhere and couldn't ever remember seeing medications advertised on TV. So, it must be brain surgery or chemo or something… right?
Thankfully my neurologist prescribed a pill which is a type of disease-modifying therapy (DMT), to slow the progression of MS. There are actually dozens of pills and other infusion treatments available as well, and funny enough, I now seem to see ads for them everywhere. Since early intervention for both my disease and substance use disorder is crucial for their management, making treatment less intimidating is essential.
Community helps.
We have always done a ton of group therapy in the treatment of substance use disorders, more so than in the treatment of other psychological conditions. This is because this condition, in particular, thrives in isolation. Isolation breeds thoughts like, "No one will know," "No one cares anyway," "I'm only hurting me," and a classic self-diagnosis: "terminally unique."
Terminally unique people are different than everyone else and can be identified by statements or thoughts of: "no one would understand," "that works for other people, but not me," or "my story is different and worse than everyone else's."
Community shatters this. Group therapy and AA groups invite us to take an hour and listen to other people's lives, force us to see similarities, and challenge the lie addiction's been feeding us: you're the only one, and if anyone else knew, they would freak out.
To be perfectly honest, I do sometimes fall into the trap of feeling "terminally unique" with my condition. The day I was diagnosed, I went home in a bit of a daze. I assumed I should feel crestfallen, but something was holding me back. I was... kind of fine? But kind of dying? Turns out I've actually had MS for years; it's just now I know what it is. What do I do with that information?
I knew that thousands knew the answer to that question, I wasn't the only person in America with MS. But I feared that my best bet for community was going to be an online chat board with mostly people much older than me scattered across the country whose disease progression was completely different than mine and with whom I couldn't really relate to on anything else.
For distraction, I checked Instagram only to see that one of my roommates from college had shared publicly that day that she was also diagnosed with MS a few months previously and was starting an experimental treatment.
I'm certainly not happy that someone I love also has this disease. Still, I'd never even seen a character on TV with MS before, much less someone I personally knew in real life. To find out that I had someone my age in my town who I could actually talk to about it without them freaking out was a huge relief and instantly made me feel less alone.
It's just one part of who you are.
I had a client a few years back who told me more than once, "I just don't want to have to be an addict for the rest of my life. I just want to be normal". He was young, and all of his friends drank and smoked weed, and he hated the idea that instead of that, he might have to go to meetings for the rest of his life. I got that (I thought). But I also watched him relapse on heroin multiple times after slacking on his meeting attendance and going to parties at the lake trying to "be normal." It seemed to me like one's identity was a small price to pay to keep their life. I didn't really understand why he kept risking one for the other.
I struggle with MS because 95% of the time, I basically forget that I have it at all. I don't have many daily symptoms or disability progression, so it doesn't really affect my life much yet. This alarmed my family a bit, who, I think, assumed that I must just be in denial or avoidance. I feared that too, but it also didn't feel genuine or useful to put on this "chronic illness girl" identity every day. "It's a big deal" and "It isn't a big deal": how can both be true at the same time?
It still brings tears to my eyes when I think about the people who only see my clients, my parents, and my colleagues as their substance use disorder. When people make sweeping generalizations or remember only the dark, painful times created by addiction, it's like they're erasing everything else wonderful, amazing, and complex about that person. And addiction loves that; it wants to be the biggest part of a person's identity. On the flip side, for someone to erase their recovery and pretend that SUD isn't a part of their story isn't honest and can be dangerous for them.
I've landed somewhere in the middle, where I think a lot of people in recovery land, too: I will always have this illness. It's not ever going to go away completely, and it is very serious. But as long as I do what I need to do to stay healthy every day, it doesn't have to be a very big part of my life.