Invisible Illness: Living with a chronic physical illness on top of OCD
“Chronic” is a word I have come to know quite well. I have been diagnosed with not one, but two chronic illnesses that have come to define many of my life experiences. While I would never wish these disorders on anyone else, my experiences dealing with both obsessive-compulsive disorder and physical illness have ignited my passion for advocacy.
On the outside
If you were to look at me, from the outside, you see a thriving young adult—a full-time higher education professional with an active social life. From the outside, you see smiles and ceaseless energy…and hear someone laughing way too loud at her own jokes. From the outside, you see the version of who I want to be. However, it’s what you don’t see on the outside that consumes my daily life.
I was diagnosed with obsessive-compulsive disorder (OCD) at a young age. Even though I have received treatment and consider myself to be in recovery, my mind is still often occupied by perpetual, unwanted intrusive thoughts. I will forever be working to resist rituals and allow my anxiety to wax and wane as it naturally does.
Effective, specialized OCD therapy is hereLearn more
In early 2020, I began to endure another life-altering challenge, as I started becoming physically ill. Three years later, I have learned that this is another chronic condition; while doctors and specialists are trying to figure out a correct diagnosis, there is no simple cure for my ongoing symptoms and pain. These two diagnoses dominate my life, yet they are entirely invisible.
On a given day, I might be delivering a presentation at work to a large crowd, picking up my favorite snacks from Trader Joe’s, or going to trivia nights with my friends. From the outside, you see an upbeat young adult engaging in her life. What you don’t see is everything I fight through just to make those things happen.
At work, my mind is often thinking many things at once—for example:
OCD: What if you blurt out something inappropriate during the presentation and lose your job? What if you dissociate and everyone is left staring at you? What if you completely forget what you’re going to say?
Chronic illness: You might get dizzy and fall over during the presentation. You might have to go to the bathroom the entire time. You might yawn due to fatigue and everyone will think that’s rude!
While the concerns from my chronic illness are more likely to happen than the nonsense OCD is sputtering, they both feel very real. They both greatly impact how I do daily tasks.
This can be seen in something as simple as grocery shopping, too. It sounds a lot like this:
OCD: What if all of a sudden you get the urge to harm someone? What if you take the last container of strawberries when someone else really wanted them? What if you’re spending too much money and end up going broke?
Chronic illness: You may experience severe stomach pain while you’re in the store. You shouldn’t try that new dish—you might have a reaction to it! What if the replacements to this dairy-free cream cheese make you even sicker?
Even hanging out with life-long friends can cause terror in my mind.
OCD: What if your friends actually hate you and just invited you to be nice? You might ruin the night for them. What if you say the wrong thing and your friends get mad?
Chronic illness: It might be too loud at trivia and you’ll develop a migraine. You might be in the bathroom too long and your friends will get worried. You’ll have an allergic reaction and need to go home early—why even go?
These are just some small insights into what goes on inside my head every day. My coworkers, friends, and fellow shoppers would never even know that any of this is happening. That’s the toughest part of invisible illness—I never “look sick.” I hardly ever even seem sick.
Comorbidities: How one makes the other worse
OCD centers around fearful, recurring thoughts about the unknown and urgent attempts to soothe the anxiety caused by the unknown.
You might be able to imagine how frequent, unexplainable medical crises exacerbate my anxiety. My condition remains undiagnosed despite seeing over thirty physicians, having more than fifteen medical exams, and visiting the emergency room five times. This means that there is no explanation for why my symptoms—like migraines, dizziness, fatigue, allergic reactions, and more—occur.
When I have a flare-up of symptoms, my OCD typically kicks into high gear. It offers a number of catastrophic suggestions for why I am experiencing physical pain. OCD requires that everything be done urgently. I often call my doctors and try to get an appointment in which I can be seen immediately. Unfortunately, that rarely ever happens. Doctors’ offices typically do not have next-day appointments, and often, they require scheduling to be done months in advance.
I’ll be on the phone trying to schedule an appointment or speak with a nurse and I’ll explain my symptoms. I’ll share that I seem to be having an allergic reaction where I am incredibly itchy to the point where I am reacting to the articles of clothing I’m wearing.
“What did you react to?”
“I’m not sure.” (Translation: this has been going on for three years and if I knew, I wouldn’t go near that thing).
“How do you not know? Is it something you ate?” (It is never food-related, but them even suggesting that puts doubt in my head).
“No, I’m not sure what it is. I have taken over-the-counter meds and I still feel itchy.”
“So it’s only itchiness? If something more extreme happens or you feel your throat closing up, go to the ER. Otherwise, there’s nothing else we can do.” I know I have OCD, but who wouldn’t freak out at least a little bit at someone suggesting their throat might close up? Also, the suggestion I often get—that it’s only itchiness or only a headache—often makes me question if I’m overreacting, which leads to a great deal of rumination.
This is a real conversation I have had. In fact, this is a real conversation I have had many times regarding various symptoms. My symptoms often don’t warrant treatment in an emergency room, so there’s often no place for me to go, and nothing I can do.
The one thing I can definitely do? Google.
Google loves to tell us that a simple symptom is part of a larger disease. The interesting part about my medical past and OCD is that I might actually prefer to be diagnosed with a scary disease than to live as I do right now. In some way, I’d feel relieved. Why? I would finally have some certainty. I would know why I am experiencing these awful sensations and could put a name to my suffering. It’s similar to the relief I felt when I learned I had OCD and that it was manageable.
The “Comparison Trap”
I often fall into the trap of comparing myself to others. It’s easy to think that people have it all together when all we see is what’s being presented from the outside.
At 23 years old, it is not typical to be organizing multitudes of doctor appointments, stressing about insurance reimbursements, or worrying about walking up a flight of stairs. It’s not typical to frantically check locked doors, avoid going out after 10 pm, or repeatedly search my room for bugs.
These things are part of who I am but are also things that not many people—even those closest to me—actually see. They’re invisible.
Next time you find yourself falling into the comparison trap, as I often do, please remember that everyone has things in their life that are invisible to you and others, things that you can never understand from the outside.
Managing life with the right tools
The nice thing about exposure and response prevention (ERP) therapy is that many of the tools I have learned can be used in dealing with a chronic medical condition as well.
Effective, specialized OCD therapy is hereLearn more
When I am having an allergic reaction or another similar symptom, I often have to ride the wave of discomfort, just like I would with an uncomfortable intrusive thought.
Self-compassion, radical acceptance, and connecting with others can also be valuable.
Please know that if you are dealing with chronic illness on top of OCD, you are certainly not alone! These conditions can be incredibly painful and frustrating but are also manageable.
Jessie works as an Undergraduate Admissions Counselor. She will attend the School of Social Work at Boston University in the fall of 2023 to become a therapist specializing in treating OCD. Since getting diagnosed with OCD as a young child and learning ERP, she is passionate about helping others and reducing the stigma around mental health disorders. She co-founded the IOCDF Chronic Illness/Disability Special Interest Group and helps lead virtual meet-ups for the IOCDF Young Adult Special Interest Group.
NOCD Therapists specialize in treating OCDView all therapists
Licensed Therapist, MA
I started as a therapist over 14 years ago, working in different mental health environments. Many people with OCD that weren't being treated for it crossed my path and weren't getting better. I decided that I wanted to help people with OCD, so I became an OCD therapist, and eventually, a clinical supervisor. I treated people using Exposure and Response Prevention (ERP) and saw people get better day in and day out. I continue to use ERP because nothing is more effective in treating OCD.
Licensed Therapist, LCMHC
When I started treating OCD, I quickly realized how much this type of work means to me because I had to learn how to be okay with discomfort and uncertainty myself. I’ve been practicing as a licensed therapist since 2016. My graduate work is in mental health counseling, and I use Exposure and Response Prevention (ERP) therapy because it’s the gold standard of OCD treatment.
Licensed Therapy, LMHC
I've been a licensed counselor since 2013, having run my private practice with a steady influx of OCD cases for several years. Out of all the approaches to OCD treatment that I've used, I find Exposure and Response Prevention (ERP) therapy to be the most effective. ERP goes beyond other methods and tackles the problem head-on. By using ERP in our sessions, you can look forward to better days ahead.