An update, plus answers to some of my most frequently asked questions.
Update – How I’m Doing Now
May 12th, 2022 marked eighteen months since I took my final dose of the SSRI drug Celexa, after a 5.5 year long taper (you can read my story here). I thought it might be helpful to share an update about my progress, and to answer some questions I get asked a lot in my work with others who are navigating the tapering and withdrawal process. Hopefully what follows will be informative and helpful, or at least interesting to read.
I have made so much progress healing. All that seems to remain is some of the residual itching/reactive/burning skin stuff (though it continues to slowly improve), general nervous system sensitivity which looks like getting both overstimulated and exhausted by everyday kinds of things more easily than I would like, feeling less resilient sometimes than I would like in the face of daily life stressors, and trouble adjusting my eyes to oncoming headlights when driving at night. At this point though, none of these things keep me from functioning like a relatively normal person. I also trust that they will continue to improve as more time passes.
This year (2022) I am getting back to work in a more significant way finally, and I feel genuinely ready to be taking that on. (From a withdrawal healing standpoint I think I could have done this sooner actually, but the pandemic situation has also been a factor beyond my control). My energy is pretty good overall, so is my sleep. Not perfect, but a lot better. I no longer have to plan ahead for lots of extra rest in the days leading up to and following any sort of social activity. I can exercise again without feeling awful for days afterwards. I have almost no physical pain anymore or even discomfort (with the exception of the burning skin when it happens). My mind feels clear and sharp, and I feel connected to myself, to other people, and to my life. More and more, my withdrawal is starting to feel like something that happened in the past, as opposed to something that is happening in the present.
I did not crash and burn after I reached 0mg, something so many of us in the withdrawal world fear. I did have one wave where my symptoms got worse again about 3 months out that lasted for a few weeks, but I know what set it off and it was manageable. One thing that helped me a lot even before I reached 0mg was to stop focusing so much on my symptoms… stop over-analyzing them, stop putting timelines on them, stop googling them (this is a big one), stop making predictions for my future based on them, and all of that. Instead I found that if I just focused on tending to myself in the present and on trusting that my body knows how to heal, I felt a lot more peace and it made the symptoms a lot more bearable. I turned any extra energy I might have spent on “Dr. Google” away from my symptoms and towards learning how to build a healthy foundation for myself in order to best facilitate my own healing, and my health in the future. Even though I am still recovering from all of this, I consider myself the *healthiest* overall that I have ever been in my life, because I finally have a solid foundation that I never did before.
My Most Frequently Asked Questions
I’d like to speak to a few of the questions I get asked often ever since I have been completely off, because I think it might be helpful to others. I hope it will be, anyway.
One thing that comes up a lot is whether my depression and anxiety came back. Here’s the thing: I have had “symptoms” that a doctor would diagnose as some kind of depression and anxiety my entire life… before psych drugs, on every psych drug I ever tried, and today. But here’s the other thing: I am a dynamic, sensitive, deeply-feeling human being, and my human experience runs the gamut. I have come to realize this is actually as it should be! Today I know my experience of being human includes things that could still be labeled as anxiety and depression if I ever chose to go down the diagnostic route again. But I won’t, because for me identifying with those labels only serves to keep me stuck in disempowering stories about myself and my truth. I also know my experience of being human includes feelings of deep gratitude, awe, wonder, joy, connection, profound meaning, a sense of purpose, and more. Yes, I have worked hard to cultivate this side of things and in doing so I learned that if I didn’t feel the hard things (ie. depression and anxiety), I wouldn’t experience the beautiful things in the same way that I do. And so I think a more informative thing for me to speak to is this: What is my quality of life like today? How does my life feel today? And the answer is: my quality of life is overall, better than it’s ever been. My life feels like it’s finally starting to make sense, and to align with what’s most important to me. This is after years of feeling very lost. Things aren’t perfect: I do have hard days–hard weeks even–where sadness, fear, and despair can creep in. But I have learned that the hard times always pass. I have learned tools and strategies, and I have built supports for navigating when things get hard. I now conceptualize the hard times differently than I used to–ie. as a human being having a human experience, instead of as evidence that there is something wrong with me. I have also learned to relate to myself during the hard times differently than I used to and that’s changed everything. I have a good quality of life today, because I am learning to make space for all of my humanity. I could have saved myself a lot of suffering and two decades on SSRIs if I had understood that my problem was never my “symptoms” or experience of dis-ease: my problem was the stories I attached to my experiences of dis-ease, and a lack of necessary understanding support in many different areas of my life. And as I said in My (S)SRI Story linked in the first paragraph of this post, I believe that when feelings of anxiety and depression–and anything else–are disproportionate to the rest of my experience in life, it’s actually an invitation to get curious… to lean in, grow, adapt, change, and ultimately to be steeped more fully in all the richness that our lives and our humanness have to offer. It is this story that I now attach to my hard experiences, and it continues to serve me well.
Another thing that comes up often is whether I feel like I am back to my pre-drug baseline, or back to normal. And it’s a good question, except I have no idea what “back to my baseline” or “back to normal” means. I was 15 when I started taking SSRIs. Today I am 35, and literally everything about my life is completely different than it was 20 years ago. I would actually hope that my normal would be totally different at 35 than it was at 15 even if I had never touched a psych drug, because we are meant to grow and change. So I don’t think of it as “back to” anything, I think of it as forward to a new baseline… to a new normal that is more adaptive and healthy than it’s been before. And in this regard I am slowly but surely finding solid ground.
Sometimes I get questions about whether I had X symptom, and if so how long it lasted, and when in my withdrawal process it went away. On the one hand I wish I had kept better track because it would be interesting to look back on and it might be useful for other people. On the other hand not focusing so much on my symptoms is part of what helped me get through. That’s my way of saying I don’t remember when on my journey most of my symptoms started or stopped. Things just kind of gradually faded away, until I would realize… “hey, I haven’t noticed X being a problem in awhile.” So, I am not the best resource to ask about symptom healing timelines. One of the most powerful lessons this journey taught me is that my body is always on my side even when I feel like it has turned against me. It knows how to heal and it’s always doing the very best it can with what it has. And every healing journey looks a little–or a lot–different. Trusting in this a little bit more, and focusing on comparing symptoms and timelines with anyone else a little bit less, can help (easier said than done, I know).
Stability between dose reductions is another thing that understandably comes up, so: how did I know I was stable enough to make another reduction? To be honest, I cannot remember any point during my taper when I was totally symptom-free. “Stable” for me simply meant that my symptoms were consistently manageable enough that I knew I could risk the chance that they would get worse again for a while. That’s it. This also means that I never had “windows” where I felt great and had a complete reprieve… I just had periods where my symptoms were either more or less manageable. Stable for me meant that things had been consistently on the more manageable side for at least a couple of weeks, and ideally a bit longer. That’s how I would gauge when to reduce again. It taught me how to really tune in and listen to my body in a brand new and more nuanced way than ever before. “Stable” is so subjective for us I think. Trust your body and your intuition.
I think of my healing journey through withdrawal as being both active and passive. The way out is through, and I couldn’t rush that process. I had to learn to accept that it will take whatever it takes and that no good will come from me trying to bypass or circumvent any part of it, or from judging it, or judging myself because of it. I think of this as more of the passive part, though practicing acceptance can be very active. And also by the same token, I got curious about why and how I ended up in such a bad position, because for me it was about a lot more than simply having been misled about the drugs I took. I began to dig deep into what healing and being truly well really looks like for me… not just from the drugs and withdrawal but from the things that lead me to being medicated in the first place. This has been what I think of as the active part. So another thing that comes up sometimes is exactly what I did to make the progress that I have made. And perhaps a more relevant question is: what didn’t I do? I have changed almost my entire life since I began my withdrawal journey. I didn’t know that’s what was going to happen, but this is how it’s gone. Very slowly, as I’ve been able, I’ve gone over my life with a fine-toothed comb and systematically addressed all kinds of factors as they arose that I believed were contributing to my overall dis-ease. For me factors included: poor diet, unresolved trauma, lack of healthy personal boundaries, imbalanced relationships, inadequate support in multiple areas of my life, impaired functioning of my body’s natural detoxification pathways, a lack of a sense of deeper meaning and higher purpose in my life, unhealthy daily habits, attachment to limiting and disempowering beliefs about myself and the world… and more. I see now that what is most important is not specifically what I did, but everything I learned about myself in the process of asking different questions, trying different things, and exploring all the various aforementioned factors. I wouldn’t expect anyone else to do exactly what I did and get the same results because our bodies and our lives are all different. The medicine and the magic are in getting curious about yourself and your own experience, and continuing to explore and grow in whatever ways you are able to–no matter how small–even when it feels really hard and scary. Especially when it feels hard and scary. This is the part that is my actual life’s work with myself.
Would I ever take an antidepressant drug in the future, if things were to “get really bad” again? The answer is unequivocally: NO. Under no circumstances will I ever touch another antidepressant or rely on any psychiatric drug to get me through a bad time. This is not only because I know how potentially dangerous and damaging they are, but also because of what I shared above about how I now conceptualize my experiences of dis-ease today. Taking a drug again just doesn’t make any sense to me, and that’s it. But please understand, I say this with the caveat that I can only speak for myself. Some opt to go back on something in the future, and others opt not to taper all the way to 0mg, and these decisions are just as valid. There is no wrong or right, or bad or good, or weak or strong, or whatever else with any of this. It’s about what we need to keep going, which like all the rest of this is very individual. Doing what it takes to keep going, whatever that means, is brave. It would simply be my hope that whatever choice anyone makes–whether it’s to stay off, or to stay on, or to go back on something–that said choice would come from a place deep down that feels peaceful, aligned, and empowered (not pressured, hopeless, or fearful), and that said choice would be made on the basis of being fully informed about all the various options available and the potential risks and benefits of each.
One final thing: where I am today and the progress I have made is not a reflection of what I did yesterday, or the day before yesterday, or even last week. It’s a reflection of the years of hard work, determination, perseverance, and grit that I have put into navigating this process and learning how to give my body what it needs to heal itself on many levels. Today I know without a doubt that all of the time when I felt like I was getting nowhere, there was actually really important and significant healing happening. Things just hadn’t reached that critical threshold where I started to feel a difference yet. In hindsight this is crystal clear to me, but it wasn’t for a long time. Of course we are all different. What took me years might not take someone else as long. But all of this is to say… I know if you’re still really “in it” it feels impossible to believe, but: it gets better. It gets so much better. Keep going, just keep going.