Chronic pain is like a bad smell that won’t go away. It’s a relentless companion, a constant ache that can erode not just physical well-being, but mental health too. While the physical burden is obvious, the psychological toll is often overlooked. One common, yet often misunderstood, consequence of chronic pain is the development or exacerbation of Obsessive-Compulsive Disorder (OCD). I often talk about my depression and anxiety, and to a lesser extent my PTSD and Panic Disorder, but don’t often mention that I have severe OCD, which developed after my first accident, and was made worse by my second accident.
In private, my OCD plays a dominant role in my day to day goings ons. My days are filled with rituals, certain habits and multiple routines. I have a certain order of doing tasks, chores and activities that I don’t stray from. I have to do things a certain way, in a consistent format and order. I practice counting and tapping my fingers in various patterns, to self regulate when I’m anxious or feeling scattered and distressed. I have to have the volume at a certain level, which varies from device to device and my favourite number is 4 so I try and include that into my day. It really presents in my artwork, which is finely detailed and symmetrical ink drawings comprised of repetitive patterns. Perfect for my OCD because my artwork, if I’m being honest, is really well done because of my OCD. Things are evenly spread out, symmetrical and follow a pattern. Especially my line work and how I space my patterns out (always in groups of 4!). My OCD is everywhere and these things I do because of it, oddly enough give me comfort and reassurance, and I suppose give my brain a sense of control.
Why the Connection? The Perfect Storm for OCD
The link between chronic pain and OCD isn't coincidental. Several factors contribute to this increased vulnerability:
Loss of Control: Chronic pain often strips individuals of their sense of control over their bodies and lives. This loss can create a fertile ground for OCD, where rituals and compulsions offer a perceived sense of mastery in an otherwise unpredictable situation. This loss of control in our lives has us seeking out things in our life we can control, and that often manifests in the rituals and compulsions that make up OCD.
Hypervigilance and Focus on Sensations: Chronic pain sufferers are often hypervigilant to bodily sensations, constantly scanning for changes or increases in pain. This heightened awareness can blur the lines between normal sensations and intrusive thoughts, a key characteristic of OCD. Oh the intrusive thoughts, they are exactly as the name describes and they can be incessant and damaging to our mental health. It’s not like you can just turn the off, it takes practice to learn this skill.
Anxiety and Fear: Chronic pain is frequently accompanied by anxiety and fear – fear of worsening pain, fear of the unknown, fear of losing functionality. These emotions can fuel obsessive thoughts and compulsive behaviors as a way to manage the overwhelming anxiety. I find when my thoughts and emotions are hard to rein in, I tap my fingers in a pattern of 4 and it is oddly soothing. I draw patterns for the sake of drawing patterns, and I write. I love to write. Just the repetition of tapping and counting while breathing, the drawing of symmetrical patterns and my use of the number 4 bring a sense of calm to my mind.
Disrupted Routines and Social Isolation: Chronic pain can disrupt daily routines, limit social interaction, and lead to isolation. This disruption can create a void that OCD rituals and compulsions fill, providing a sense of structure and purpose. I thrive on structure and routine and do not do well without it. This is both good and bad. This structure helps keep my thoughts and routines in order as well as helps keep me organized, but it also prevents me from accomplishing everything I want to do in my life.
OCD can manifest in various ways within the context of chronic pain. Here are some examples:
Contamination Fears: Individuals might develop an intense fear of germs or dirt, believing that these contaminants could worsen their pain or trigger a flare-up. Compulsions might involve excessive hand washing or cleaning. Example: Someone with fibromyalgia might excessively clean their home, fearing that dust mites could exacerbate their muscle pain. Oddly enough this does not present itself in my OCD, but I certainly make up for it with other common symptoms of OCD that plague me.
Checking Compulsions: Individuals might repeatedly check things related to their pain management, such as medication dosages, medical appointments, or even body temperature. Example: Someone with chronic back pain might repeatedly check their posture in a mirror, fearing that a slight misalignment could lead to debilitating pain. I find I get caught up in checking if I’ve taken my medications (I check my med tracking app multiple times a day because I forget if I’ve taken them or not).
Somatic Obsessions: These obsessions center around physical sensations and fears of illness. Individuals might become fixated on normal bodily functions, interpreting them as signs of a serious medical problem. Example: Someone with chronic headaches might constantly monitor their head for any unusual sensations, fearing a brain aneurysm. For a long time I feared my Complex Regional Pain Syndrome (CRPS) was going to spread further than my legs, and every little ache and pain in my upper body had me fearing that it was spreading. This can be very stressful.
Mental Rituals: These can involve repetitive prayers, affirmations or mantras, counting, or mental reviewing of past events, all aimed at preventing pain or minimizing its impact. Example: Someone with arthritis might mentally list all the foods they believe they should avoid to prevent joint inflammation. Like I said before, I like to count and tap my fingers in a pattern as one way to cope. I tell myself “You got this!” multiple times a day when I’m struggling to complete a task. I also follow the same morning routine in the same order every morning. Same with the evening. It’s how I start and end my day and I feel unsettled when I don’t do them.
Ordering and Symmetry: A need for order and symmetry in their environment, believing it somehow impacts their pain levels. Example: Someone with nerve pain might meticulously arrange their pillows and blankets, believing that a specific arrangement will alleviate their discomfort. This one I struggle with too, and it especially presents itself in my artwork and crafts, how I plate food and how I organize in my home. I have a gift of spacial awareness and my OCD likes that.
The combination of chronic pain and OCD can be profoundly limiting, impacting nearly every aspect of life:
Reduced Functionality: OCD rituals and compulsions can consume significant time and energy, leaving little room for other activities. It sounds silly to say that this is how you spend parts of your days, doing things driven by your OCD, but the struggle is real. Doing these habits, rituals and routines can be very time consuming. Before I was on medication, I was spending my days rearranging and measuring things. It didn’t eliminate my OCD but it definitely lessened the impact it has on my life. I am able to manage most of my symptoms and my days are no longer filled with OCD rituals and routines.
Social Isolation: Individuals might avoid social situations due to their OCD symptoms or the fear of their pain worsening. There are some things about myself and my chronic pain that I don’t talk about often, and the struggle my OCD presents itself out of the house has me worry I’ll embarrass myself.
Emotional Distress: The constant struggle with pain and OCD can lead to feelings of anxiety, depression, guilt, and shame. Most people know that living this way is not ideal, and that it impacts others, and is even embarrassing, but combined with other mental health issues caused by chronic pain, doing some of these things seems easier than trying to fight against them. I only have so much energy to put into managing my mental health and in a way I have to pick and choose my battles.
Financial Strain: Medical expenses, therapy costs, and lost work productivity can create a significant financial burden. This is a big one. I went to therapy 1-2 times a week for 6 years, and while I learned coping techniques for my OCD, it’s mostly the medication I’m on that reduced my OCD symptoms significantly, and not therapy. The medication made it so that I was not spending all day measuring, counting, and such and that meant I could work on controlling my compulsions and rituals with the therapeutic skills I was learning in therapy.
While living with chronic pain and OCD can be challenging, there are effective strategies for managing both conditions:
Professional Help: Seeking help from a therapist specializing in Cognitive Behavioral Therapy (CBT), particularly Exposure and Response Prevention (ERP), is crucial. ERP helps individuals gradually confront their fears and resist compulsive behaviors. I also have done work in OCD workbooks to help lessen the impact that OCD has on my life.
Pain Management: Working with a pain specialist to develop a comprehensive pain management plan is essential. This might involve medication, physical therapy, and other modalities. This is vital. The more pain you feel, the less in control you feel, and that has to come out somehow.
Mindfulness and Meditation: Practicing mindfulness can help individuals become more aware of their thoughts and feelings without judgment, reducing the power of obsessive thoughts. I have found that meditation has helped me when my intrusive thoughts are consuming my mind. Focusing on breathing (confession, I breath in a pattern too and count to 4) and feeling my feelings without judgment and with compassion while I meditate, help reduce my anxiety and it lessens the impact that these intrusive thoughts are having on me.
Support Groups: Connecting with others who understand the challenges of chronic pain and OCD can provide invaluable support and reduce feelings of isolation. This is also very important. Chronic pain and mental illness are very isolating and it’s important to have that source of support that comes from others who get it because they experience it.
Self-Care: Prioritizing self-care activities, such as gentle exercise, healthy eating, and adequate sleep, can improve both physical and mental well-being. I find I do a lot of journaling, which helps me process the emotions associated with my OCD, and I meditate and colour a lot, which brings about a sense of peace and calm to my mind.
Thought Stopping: When an obsessive thought arises, consciously say "Stop!" or visualize a stop sign. This can help interrupt the cycle of rumination. This may sound silly, but it is effective if you use this technique on a regular basis.
Cognitive Restructuring: Challenge negative or distorted thoughts by examining the evidence for and against them. I have two CBT apps I use, Clarity and Clearful, and the exercises in both of them are really helpful in reframing cognitive distortions.
Gradual Exposure: Slowly expose yourself to feared situations or triggers while resisting the urge to perform compulsions. Start with small steps and gradually increase the difficulty. This is really hard. The discomfort one feels from not doing this or that or doing this or that in a different way, can be so intense, that it makes exposure therapy very difficult.
A Path Forward:
Living with the dual burdens of chronic pain and Obsessive-Compulsive Disorder (OCD) presents a complex and challenging reality. The interplay between these two conditions can create a cycle of physical discomfort and mental anguish, significantly impacting one's quality of life. However, it's crucial to understand that this is not an insurmountable battle. With a comprehensive approach that addresses both the physical and psychological aspects of these conditions, individuals can find pathways to healing and a more fulfilling life.
Beyond professional interventions, self-care plays a vital role. Engaging in mindfulness and meditation practices can help individuals detach from obsessive thoughts and manage their emotional responses. Connecting with support groups and sharing experiences with others facing similar challenges can reduce feelings of isolation and provide invaluable emotional support. Prioritizing self-care activities such as gentle exercise, healthy eating, and ensuring adequate sleep contributes to both physical and mental well-being. Mental exercises like thought stopping, cognitive restructuring, and gradual exposure can further aid in managing OCD symptoms. These techniques offer practical tools for challenging negative thought patterns and breaking free from the cycle of compulsions.
In conclusion, while the journey of living with chronic pain and OCD is undoubtedly difficult, it is not a path that must be walked alone. By combining professional treatment, self-care practices, and mental exercises, individuals can reclaim their lives, reduce the impact of these conditions, and create a more balanced and fulfilling existence. Remember, help is available, and taking the first step towards healing is a sign of strength and resilience.