Today’s blog is the latest installment from our guest blogger, Alison Dotson, author of the upcoming book, Being Me with OCD. When I read Alison’s blog below, what struck me was the importance of recognizing how self-care and flexibility are critical components of relapse prevention. Medication, cognitive behavioral therapy (CBT), or a combination of both, are all first-line treatments for OCD. However, we can sometimes forget that OCD happens inside a person. It isn’t enough to just treat our psychological and physiological symptoms — we also need to take good care of ourselves, be thoughtful of our choices, and not lose our voice in order to try to live a full, sustainable life. – IOCDF executive director, Jeff Szymanski, PhD
Seven years ago I was diagnosed with OCD. I finally—finally!—knew what was going on, and that meant I could get help. One of the first lines of defense against my intrusive thoughts was Paxil. The first few weeks were a mixed bag of effects: I experienced dry mouth, brain “ticks,” and fatigue. I also started to feel better, sooner than I had expected. My obsessions came on less often, and with less intensity.
After a few months, I noticed something else: I had gained some weight. I knew exactly what had happened, too. Before I started on Paxil, for years and years, I suffered from anxiety-induced stomachaches. I felt nauseous every morning; my stomach dropped like a lead weight before I walked into work each day; and there weren’t many foods I could eat without feeling queasy afterward. And if I added any stress to my everyday routine, I could forget about eating much of anything for days—even weeks—at a time, learning to get by on bananas and yogurt.
This was a diet I never planned to go on. And it never occurred to me that taking medication could make this part of my life better. I went on an antidepressant because I was depressed. I was in that terrible middle place between wanting life as I knew it to end, but not wanting my life itself to end. I swallowed those pills because my doctor told me they could help me stop obsessing, not because they’d give me an appetite.
But, oh, did they ever. It wasn’t so much that I was suddenly hungrier than ever, it was that I could eat without regretting it. A cookie no longer made my stomach churn. Eating a big sandwich with fries no longer meant I’d be stuck at home all evening, curled up on the couch in agony.
Eating was now a pleasure, not a curse, and I took full advantage of that. And it showed—just a little at first, five pounds, and then ten. I now weigh 30 pounds more than I did before I went on Paxil. At this point I can’t blame my weight gain on my medication, though. It’s been several years; I’m in my 30s now, I haven’t been working out enough, and research suggests that while Paxil does often contribute to weight gain there is no proof that it has a negative effect on weight loss. Sure, it had a hand in my growing waistline, but the rest was up to me.
After seeing some unflattering pictures of myself after a family cruise (Who’s that woman mini-golfing with us? Oh, no…), I joined a gym and signed up for the cheapest weight loss program offered. They could help me, they said, and they’d start with a metabolic assessment.
A personal trainer drew my blood, secured a blood pressure cuff on my arm, and took my pulse. Decked out in an oxygen mask and hooked up to a heart monitor, I huffed and puffed my way through the exercise portion of my assessment. Then we sat down to discuss nutrition and my test results.
As I chatted about what I ate in a typical day and told her that due to my job as a proofreader and writer I was mostly sedentary, I also mentioned that I had initially gained weight after I went on Paxil.
She drew a sharp breath. “Oh, no,” she said. “That is toxic. Toxic.” She sighed heavily. “You have to go off of it.”
Dumbfounded, I said, “Okay.” I took a moment to gather my thoughts. “Well, I don’t plan to stop taking it, so can we work around it?”
“You won’t lose the weight if you don’t.”
“Well, Paxil has been shown to cause weight gain, but my doctor told me there’s no evidence that it prevents weight loss.”
“I’d be interested in seeing that study,” she said. “Wouldn’t surprise me if it was paid for by the drug manufacturer.”
“I don’t think it was just one study…”
“Do you want to lose the weight?”
“Well, yes, but I’m not just going to stop taking my medication. I have an anxiety disorder, and…”
“If we get your nutrition in line you’ll find that you won’t need it. You got that way for a reason. You weren’t eating the right foods or exercising enough. You need healthy fats and animal protein and you’ll feel better and won’t have that stress anymore.”
“I’ll definitely try all that, and I believe nutrition is important,” I said, my voice shaking. “But I won’t knock my medication—it saved my life. I was suicidal before I went on it.”
“But what about quality of life?”
I took a deep—deep—breath. “I’d rather be alive and a little overweight.”
In an attempt to stay relatively calm as this woman refused to listen to my concerns, goals, and medical history I had dug my nails into my palms so forcefully I had left marks. I wanted to write her off as misinformed, as a fitness nut who cared more about how her legs looked in a short skirt than about being healthy and happy. But she had hit a nerve—hard.
That night I jumped on my laptop and spent hours reading about weight gain and Paxil. Almost every site verified that Paxil is the SSRI most likely to cause weight gain, and there was even a whole site of former Paxil devotees who had defected, either switching medication or quitting antidepressants altogether. Not surprisingly, I got too invested in the topic and began to agonize over it. Was it as simple as cutting Paxil out? Would the pounds magically melt away as soon as I threw out my last bottle?
I had just switched doctors, and when I met with her for the first time, I recounted this whole conversation for her and explained that while I had always liked being on the smaller side I was worried about the possible negative effects of going off my medication. I was worried that I would be playing with fire—it had worked so well for me, so why was I even considering switching to something else? What if I went off of it, felt terrible, and then couldn’t get the same great results if I decided to take it again? Was all of this second-guessing and experimentation worth it—for 30 pounds?
She explained that while there are some drugs that cause weight gain and doctors and researchers can pinpoint the pharmacological reason behind it, Paxil is not one of them. Others who have gained weight may have lost their appetite, like I had, when they were depressed, and now they’ve gotten it back.
And, she said, “You know, you’ll have a hard time losing weight if your OCD symptoms flare up and interfere with your life again, too. You won’t get to the gym much in that case, either.”
Yes, I was sick of weighing too much, sick of pulling on pants that had fit several months before only to realize they refused to zip. But I couldn’t let that disappointment consume me. No matter what, nothing is more important than my mental health and well-being. So I vowed to start small and see what happened. If I started to eat better, being sure to introduce more healthy whole foods into my diet, and committed to an exercise routine, there was a chance I could lose the weight and take the medication that had helped ease my once unbearable pain, slowing my fast-going train of obsessive thoughts so I could tackle them head-on, and one by one.
The meeting at the gym had been tense and frustrating, and I let it get to me. But the trainer had asked a very important question: “What about quality of life?”
Her version of a good quality of life included a tight, toned, and, yes, healthy body. And that’s great. But I had to ask myself that question. My quality of life is about being a relatively happy, well-rounded person. It’s about staying on top of my obsessions, and while exercise and proper nutrition are undeniably beneficial, they can’t do everything. Hopping on an elliptical can’t replace talking myself through an intrusive thought, and fish oils aren’t the end-all, be-all solution to happiness. As with anything in life, it’s all about balance. And next time someone tells me I’m not leading my life the “right” way, I’ll try to take it in stride, remember my doctor’s advice, and listen to my instincts.
Oh, and if you’re wondering whether it’s possible to lose weight while on Paxil: I took the trainer’s advice with a grain of salt, applying what worked for me and my life—less sugar here, more protein there, and walking more than driving—and within a few weeks, my pants were looser. Yesterday I effortlessly zipped up a dress that my husband and I had to team up on just a month ago. I’m making progress, slowly but surely, and I’m doing it my way.
Tell me: Have you had any frustrating experiences like I had with the personal trainer or someone else trying to be “helpful”? Have you found yourself explaining what OCD is and what it means to have it? How did you handle the situation?
Brilliant post! Thank you so much for sharing your experiences. There is a lot of wisdom in your words. If I have to choose between extra weight or a mind that is more at peace, well, as far as I’m concerned, there is no choice. When my OCD was at its worst, there was no quality of life. Absolutely none.
Thank you so much! I just couldn’t bring myself to try something new–I know some people have to try several different medications before finding the right one, and I consider myself lucky to have gotten it right on the first try. I just need to do what everyone else does when they want to shape up–there’s no magic potion!
I can speak from experience. I have been on Paxil for 15 years. I recently met with a nutritionist and have lost 13lbs. Before stopping any medications you may want to meet with your medical team. You also may want to meet with a nutritionist. They are really helpful!!! Good luck!
Awesome post! Thank you for sharing. Your experience is a perfect example of the lack of understanding that many people have for OCD. They always write it off and say, “it’s just in your head, stop it.” But that’s the problem, it is in our head and we can’t stop it. So I congratulate you on staying strong and not caving in to your personal trainer. Looking forward to your future posts!
Thank you! And thanks for commenting. I’m trying to create understanding bit by bit, but it can still be hard to encounter people who don’t seem like they’re even trying to get it! I will have more posts for sure. Thanks for reading.
if we could stop it don’t you think we would.
Interesting reading. I would be interested to know whether this book is helpful for adults. My husband (58yrs) has been diagnosed with OCD and we are having many difficulties as it is interfering with our family life.
Patricia, There are a number of resources for family members of individuals with OCD on our website here: http://ocfoundation.org/family.aspx
Hi, Patricia, thanks for writing. My book is for teens and young adults, so your husband isn’t in the target audience, but that doesn’t mean he wouldn’t find some parts of it helpful. But as Carly mentioned, there are many resources out there that aren’t geared specifically toward young people, and for family members. Good luck!
Alison, I could feel my blood pressure rising as I read this! One of my biggest frustrations is when people try to guilt others for taking medication. MAKES ME SO MAD. I’m guessing many of them don’t know what life is like in the dark, hopeless grip of OCD.
I think a lot of people see OCD as the media portrays it on tv. I think that very few people realize how bad the obsessions and complusions get for some. For me it was driving all night long to replace a “bad” thought because I couldn’t stand for the slight possibility of the thought that “popped” into my head to happen.
[…] someone with an anxiety disorder, I know all too well how important it is to lead a balanced life! Read about the whole exchange on the International OCD […]
Reblogged this on Being Me with OCD.
[…] I read this post by Alison Dotson on the IOCDF’s website that really spoke to me. She talks about an […]
I have suffering from ocd since 14 and it has mostly affected my studies.. There are times when i could not study and my parents still dont get what i am facing. They always say me to work hard but i know with it working hard would be just embittering the dituation.. i have thoughts like stoppping at every preposition and i cannot therefore assess the sentence.. I have my ukcat this week and i have not been abe to study well.. So what should i do?
Hi, I’m so sorry for this late reply. I hope your test went well. Have you met with an OCD professional? That is the best avenue to take, and it could help your parents understand what you’re going through better, too.
interesting read, thanks for sharing. I often feel frustrated with my husband who tells me ” if you just do this, life would be better, dont be afraid” and its really frustrating because I consider myself a very brave person who has overcome many difficult things! I wish people were more informed about the difficulties of living with OCD..
Thanks for writing! I’m hoping that the more I talk about it the more people will understand. And I’m not the only one doing it, so that’s encouraging.
People with OCD are definitely brave–we struggle with obsessions and compulsions. And I know that I for one had really terrifying obsessive thoughts that made me want to sleep all the time so I didn’t have to deal with them. You are strong!
[…] read this awesome related post on the OCD Foundation’s blog recently. And it turned out that Alison, the blogger, lives in […]
[…] blog is the latest installment from our guest blogger, Alison Dotson, author of the upcoming book, Being Me with OCD. When I read […]
Thank you for posting this. I too have horrible ocd. Paxil has given me my life back. I tried a holostic approach and took every supplement out there. Changed my diet, and reduced my stress. I even quit my job. My brain needed more. I’ve lived it.
Hi, Katie! Thanks for responding. Sounds like your experience echoes mine–it’s nice to be validated once in a while. Hope you’re well!
Hey I used this site for the first time tonight. Not sure if it’s still active or if these posts are old or whatever, but I spent a long time in hospital due to my OCD around 18 moths in total and was put on loads of different meds. I was a fitness fanatic before this. I weighed 80kg but due to meds I shot up to 120kg. Even when working out 5 times a day, dieting hard I couldn’t shift the weight. It was only when the psychiatrist called me into his office one morning in hospital and told me my bone density was seriously being affected by some of the meds so they took me off a lot of them (Risperidone, Mertazampine and many others been so many can’t even remember their names!) then I started to lose weight. I’m currently on Venaflaxine and Zoplicone for sleeping. I kind of agree with the PT in the sense for depression I think a lot of that can be cured by exercise and nutrition (I also have depression) but I’ve also experienced some people who’s depression is so bad that they need meds with no doubt. I do think it’s sad in the UK that GPS hand out antidepressants as a quick fix rather than addressing other factors first but with the increase of mental health I can see the pressure they are under. When I was in hospital last year I lost 40kg in about four months through diet, intense workouts but coming off the meds defiantly helped. Thankfully when I came off all the other meds they had no effect on me, it was the Venaflaxine that was helping all along. But people who don’t have OCD don’t understand and a lot of fitness people I think fall into undiagnosed Body Dysmorphic Disorder illnesses. I’ve also been diagnosed with that, which is a form of OCD as I’m sure you know.
It’s hard to accept but if I ever needed to go back on the meds for some reason weight gain is horrible but I agree the torment of OCD is much worse.
Not sure what I’m even trying to say, but encourage you that it’s the best choice and to validate you that your worth does not come from your outward appearance whatsoever. I read a beautiful book if I may, Timothy Keller – The Blessed Self-Forgetfulness, he has written the best material I’ve ever seen on body image related issues related anyone struggling with weight gain.
Also, for anyone who struggles going to the gym while having extra pounds or OCD related issues, Joe Wicks has some amazing free online workouts on YouTube. The sessions are short and can be done at home, especially during LockDown! Sadly many PTs are very image focused rather than health focused anyway, I had similar experiences with a PT when losing weight through OCD but they simply don’t understand our struggles.
So wonderful you are willing to share your thoughts and journey with us. Really encouraging thank you!
My son has recently been diagnosed with OCD. The intrusive thoughts are the worse thing ever! His doctor put him on 20mg of Lexapro but that does not seem to do anything (2 months). Is there anyone on this site that takes something different that you have had good results in minimizing these thoughts??
Hi hopeful mom, thank you for sharing that. Please contact us at info@iocdf.org and our resource specialist will help you find support.
Hi so my doctors just prescribed me paxil as I had a conversation with the crisis team and explained the relentless intrusive thoughts so their changing ne from venaflaxine to paxil I was just wondering has anyone ever tried the 2 and noticed a difference because I’m so drained at the minute just want somthing that will work
I’m a Physician Assistant who has been battling with Anxiety for most my life. Usually in the form of social anxiety. Then certain life events weighed on excessive intrusive thoughts that compounded my anxiety. I went on Paxil and noticed relief within weeks…but I also noticed a 20lbs weight gain. I went from 185 to 205 in months. So I stopped and went on Effexor. I was able to get my diet under control, find a new exercise plan, and went down to 195. However I noticed the relief I felt from Paxil wasn’t there with Effexor…so I went back on Paxil. I agree with your similar belief…I’d rather be slightly “Dad Bod” and happy…than an anxious mess.