Welcome, welcome to this week’s Tuesday Q&A! About a year ago I started to see today’s guest, Angie Alexander, comment with compassion and wisdom in some of the OCD support groups I belong to on Facebook, and then one weekend afternoon last spring we participated in a four-person video all about intrusive thoughts. Angie was so knowledgeable I assumed she’d been at this whole advocacy thing forever—imagine my surprise when I learned she’d been diagnosed just months before! She’d gone from years and years of confusion to a flash of clarity and right on to sharing her story with hundreds of fellow sufferers on Facebook. Folks, it took me years after diagnosis before I could talk about my intrusive thoughts, so Angie’s courage and the way she almost immediately payed everything forward floored me. And I don’t know how she finds the time. She has five kids!
We got to room together at the last conference—we’d never actually met in person and suddenly we were sharing a bed. “Great to finally meet you! All right, lights out. I’m sorry if I snuggle up to you in the middle of the night thinking you’re my husband.” She’s just as sweet and genuine in person as she is as moderator of several support groups on Facebook, including the first she started up, Friends With OCD. Let’s hear more from Angie—her answers are truly beautiful. I was touched to read them and I’m honored to share them with you, my dear readers.
Like so many other people with OCD, you had the disorder for years before you were diagnosed. What obsessions had you been struggling with the most, and how did you finally realize what you’d been going through might be OCD?
By far, the most intense and dominant themes in my experience were hypochondria (aka “health OCD”) and harm OCD. Health OCD was the most prominent throughout my journey, whereas harm OCD didn’t rear its head until after the birth of my first child. I suffered with feeling as though I would be diagnosed with other life-altering illnesses that my family or close friends had suffered from, and any fever or headache meant certain death. As a small child I begged for reassurance from my mother that little bumps I had found through careful exploration were not in fact cancer, and that the fevers or stiff necks I felt were not indeed meningitis. My loved ones always wrote off my illness and coined me as the more “sensitive child” and my acute fears were treated as more of an annoyance than a legitimate illness to be evaluated and treated.
After the birth of my first child, I was debilitated with anxiety. After being exposed to a news broadcast about a mother who had drowned her five children in a bathtub, I experienced harm thoughts night and day, and was terrified to be alone with my child. I turned to a few older women who were religious, and naturally accepted the belief that through enough prayer and bible memorization, my malady would resolve on its own. After all, it was certainly not the kind of thing you’d take medication for or spend money to fix. It was about self-discipline and having enough strength to brave your own mind. Or was it?
Fourteen years had passed, along with plenty of bible studies, prayers, and petitions to any available deity that could perhaps heal my broken spirit. Moreover, my seemingly broken mind. OCD ebbs and flows, as most of us who suffer from it have come to know. It receded and swelled throughout those sometimes excruciatingly long years, until finally after the birth of my fifth child, I could no longer go at it alone.
I knew that whomever I shared my story with had to be full of wisdom, and moreover compassion, in order to truly grasp the heart of the matter. But whose life is overflowing with this quality of person, right? Out of a sea of people over 14+ years, how do you set your mark on one sort of super human? I don’t know if it’s just where I’ve walked, but my life hasn’t necessarily been overflowing with a sensitive sort of people if you know what I mean. It’s not like you can just walk up to someone who you respect and admire, and moreover who you hope respects and appreciates you in return, and explain to them that you think you might be a danger to your children and that, just in case, you probably shouldn’t be left alone with them. Any time you open up to someone, it’s always a gamble. You’re sharing pieces of yourself, like in a game of chess or something. You’re moving your pieces around, and you’re hoping it’s allowed and you’re hoping you’ll survive, and when someone takes a piece that you’ve exposed, they just play fair. That’s all any of us really wants, I think. Well I gambled, and I chose to expose my most vulnerable pieces in an attempt to survive. In nothing more than desperation and only about an ounce of deliberation, I opened up to a trusted friend. Out of anyone I could have dumped my problems on, this was the only one who made sense. I’m so glad for it too, because she totally got it. She even shared similar experiences, and what’s more, directly sought treatment for me with me. She introduced me to a term that really set my soul free: Intrusive thoughts. Such music to my ears! We found a specialist who specialized in treating people with intrusive thoughts and after three appointments with her, and lots of digging into my past (I’m a fast talker!) I discovered she wasn’t getting to the real issues.
I took to Google because sometimes being your only advocate is all that’s between you and recovery, and I uncovered the term obsessive-compulsive disorder. It was like my identity was unearthed, and something woke up inside of me. I suppose it was hope. For the first time in over 14 years I felt deeply known and understood. Granted, it was only Google rocking my world at this point, but mercy. It was only going to get better.
You were diagnosed just a year ago, and in that short time you’ve become an awareness force to be reckoned with. How did you go so quickly from diagnosis to using your story to help others?
From that first moment there in my dining room, where the seat that I was sitting on was warm from hours of searching, a fire was kindled inside of me, Alison. It was like I was validated in all the suffering I had quietly endured. It was like someone who couldn’t hear was being given the ability to listen to a symphony for the first time. Like a person who was mute was given the opportunity to speak again, or for the very first time too. Without sounding too dramatic here, it was like I was in exile, and I was coming home again. After being quiet for so long, there was no other choice but to speak out. I just had to do something. Telling people how set free I was seemed like the most authentic option, and that’s how I was determined to live: Authentically.
Since you’re a mom yourself, in the beginning you focused a lot on reaching out to other mothers with OCD. Would you say many of these women have obsessions about their children, or do you find yourself offering support for navigating the daily realities of both OCD and motherhood?
I would say that over 75 percent of the mommies I’ve reached out to and who have reached out to me have struggled with obsessions surrounding their children in some fashion or form, although I don’t think you have to be a parent to obsess about children. I think having children is just another aspect of our life that OCD can manipulate. In many ways, being a mother saved me, as it has many others. When you’re obsessing about co-workers or friends or extended family members, oftentimes it’s easy to remove yourself and engage in avoidant behavior. This is not easily done in the case of a parent or primary caregiver. Somewhere along the lines between when you wake up and when you go to bed, whether you stay at home or whether you have a career, you are responsible for this little human being and that takes personal touch and time, and consequently inevitable exposure. Children are not easy to escape or to avoid, especially if they like you.
In most cases, especially after a mommy has gone through treatment and entered into a season of recovery, OCD manifests itself differently and unsuspectingly. For example, we’ve just returned from a night of trick or treating this evening. As I write this, I’m currently in my room editing some of the responses for this fabulous blog. In the back of my mind I feel an almost overwhelming desire to go check my children’s candy. Seeing as how I like to fall on the side of laziness from time to time, I’d just as soon throw the whole kit and caboodle out than go searching every candy wrapper for a razor blade or drug paraphernalia. But even something so basic as this little “problem” that my brain feels urged to “solve” can become an insipid recipe for OCD to reach back into even a small piece of my life again. Other moms search candy. Other non-sufferers caution about checking the candy for any curious-looking wrappers or discoloration… So I find myself sharing a lot just about the basics, because OCD can seep in most indirectly, and often we just need another set of eyes to help navigate through the less than obvious life happenings sometimes. Which leads to the next question!
You run a couple of different types of support groups on Facebook. Can you explain the difference between secret and closed?
So I started a closed group called Friends With OCD back in December 2015, a month after I was officially diagnosed. This group was created so sufferers could come together and share more about their life and their families and their trials that often overlapped with OCD, but not always. I felt it was important to preserve the integrity of intimacy that we as sufferers often crave, so I decided to make the group “private,” which just means that the group can be searched for and found in a search engine, and depending upon your settings, people can see that you are in the group, but unless someone is a member of the group themselves, they cannot see what members post. After meeting the most genuine and authentic people on the planet through this outreach, I saw a need for theme-based groups. This just means that people with, for example, POCD, or HOCD, or harm OCD usually just want to find others with their same obsessions so they can reassure… ahem… I mean support one another as they seek proper treatment to overcome their illness. So I created “secret” subgroups that are sort of like the sibling groups to Friends With OCD.
Creating a “secret” group can be much more challenging and require much more care and attention because with this kind of group, it cannot be found via a search engine, even with the most detailed searching. Sufferers discover these sorts of groups through word of mouth only. They have to be friends with someone on Facebook in order to be accepted and added into the group. With either group, however, I am the only moderator who “adds members” and am very cautious in doing so. To be added to the “secret” groups you must currently have, or have had in the past, the theme the group illuminates. In regards to Friends With OCD, you must have OCD, or have a child or close relative who has OCD. I do my very best to ensure that we share in a relatively safe and supportive environment and that the gold standard in treating OCD is upheld and that reassurance and other compulsive behavior is moderated and discouraged. Compulsive behavior is allowed, however, and even welcome, as we are all at different places in our lives and grow at different paces. Above knowing the “right” stuff, it’s more important to feel cared for and accepted for who you are. When we feel free to lay our burdens at each other’s feet and can in turn be confident that we will be cared for in our vulnerability, that’s where real healing and true recovery is cultivated. At least that’s what I think.
What can members expect if they join one of your communities?
Acceptance and genuine support from fellow sufferers who have been where they are or are headed where they are going. The biggest complaint I receive from people who become members of any of the groups I moderate is one main thing: Sufferers are triggered by other sufferers. With any sort of exposure, this is of course a sort of inevitability. But just as I did when I first sought help for my illness, I weighed the cost. Is finding peer support and holding hands with others who totally and completely get you valuable enough to you to risk being triggered every so often? Being triggered is something that I use in my own life to remind me of my frailty and to keep me humble on this road to helping others. Triggers can be scary and overwhelming and can set us back a few steps from where we want to be. Accepting where you are, whereever you are, with whatever you feel, can help you in the journey we are on in online support groups. Triggers don’t keep us safe. They keep us ignorant of how sick we are, and how truly strong we can be.
You don’t live in a city. In fact, you live on a farm with dogs, cats, chickens, and even a resident snake! Was it hard finding a treatment provider? Do you have any advice for people who may not live anywhere near an OCD specialist?
We moved from Detroit, Michigan, to the quiet hills of Tennessee, and it has been rather isolating in a lot of ways. We do have no shortage of pets to keep us company, though, that’s the truth. We name all our animals after herbs, but our snake’s name is Hank. Not sure what happened there. But little by little we are learning out here in the middle of nowhere that everything in our life is able to serve a purpose if we make room for it and examine its potential in our experience. Because we live so far from civilization, the closest “real” city is a little over an hour away. When I sought an OCD specialist, I found a few in that city, so I was able to obtain care a lot closer than many of the sufferers I rub shoulders with.
Finding effective treatment is, in my humble opinion, the #1 problem right now in the OCD community abroad. In every country, really. I talk with people from the UK, Africa, Australia, China, Russia, Canada…we all are crying out for better treatment options. If a sufferer cannot find treatment in their area and none are available via teletherapy, the next best thing is self-help books. I only had three months of formal therapy with an OCD specialist and have learned the rest of what I know and practice through self-help books. I do believe that we are often called to be our own advocate, especially in the season in which we live. No matter what the situation is though, there is always reason to hope.
If you could share just one piece of advice with others who have OCD, what would it be?
If I could just share one piece of advice with someone who is currently in the throes of OCD, or who is worrying about perhaps being in its grip again, I would say this: Wild acceptance.
No matter where you are on this road we are walking together, and no matter what thoughts you’re struggling with and no matter what seems insurmountable to you today, tomorrow, or yesterday… Acceptance is the key that unlocks every obsession. If you live trying to avoid anxiety and discomfort, you’ll never reach beyond yourself and your obsessions and get to live the life you truly deserve.
Some people ask me, “What is acceptance?” “What does that look like?” “How does a person live that out in the midst of a debilitating truth your mind is accusing you of?”
When I was a little girl my mama used to take me to a little place called “the gravel pit” in Michigan. Sounds majestic, right? It was not really large enough to be a lake, but bigger than a pond, and it was full of fish and fun in the warm summer months. I remember all those days we spent out there really well, but my fondest memory was the time my mom took in teaching me how to float. You know, where your body just lays limp on the surface of the water and both sky and sea feel like one substance. Okay, okay. It was a pond on steroids and not a sea, and my limp body wasn’t limp long because my brother was obsessed with cannonballs. He may have liked to see me squirm back to the surface too, after almost drowning from those mammoth waves that he somehow executed with precision. Every. Single. Time. They swept over my fragile body and debilitating fear ensued, along with my mother coming unhinged at that hooligan of a preteen.
Anyway. My mama used to hold my 60ish-pound body up to the top of the surface of the water. (That’s support groups.) As she spoke in such a Mr. Rogers tone, I was lulled to trust. I’m sure it was her confidence in me. She told me what I could do, and that little girl in me trusted that I could. With much trepidation still, of course. She started me out in the shallow end, where I knew my feet would land if I decided to give up too soon. But gradually she took me out to deeper and deeper waters, all the while building my trust in her. Before long I was floating all by myself, and before too much longer, I could float on even the sloppiest of waves from my growing (in annoyance and size) big brother.
The most valuable lessons that I carry with me today were the ones I learned out there on the surface of that water. When I let go of all the control. Where I relinquished (almost) every ounce of fear. When I laid there, unsure of whether I would live or die sometimes, and just surrendered it all on the water. My mom would see an elbow drop below the surface… or my lower regions. There was no saving that section though. But any time my mom would notice that I began to try and take on the water in my own strength with my own willpower, she would gently whisper, “Just close your eyes and let go.”
Acceptance for me is in the letting go of every aspect of my life. I know, it feels like letting go is so scary. Everything sensible in you is screaming, “RECKLESS! IRRESPONSIBLE!” Maybe it is a little bit of those things. But if I’ve learned anything, it’s that I have to abandon the life I thought I needed or wanted in order to live the life I truly deserve.
So in the words of Bruce Lee: “Be like water, my friend.”
Wow! Awesome interview and I’m so glad I got to “meet” Angie! Good luck with your continued advocacy work!