Being Good To Yourself During Difficult Times
In the years leading up to my diagnosis and eventual treatment of condylar resorption (CR), I suffered from what I now recognize as depression and severe anxiety, and I’ve noticed this is a common experience across other CR patients, too. I hope that sharing my experience will help people feel less alone and emphasize the importance of reaching out for help and support.
The physiological changes that result from CR are gradual, and mental health issues are not visually obvious, making it easy to minimize the physical and mental ramifications of CR or think it’s “all in your head”… but it’s not.
Airway and Anxiety
One of the most surprising effects of my bilateral total joint replacement and Lefort type 1 surgeries was the immediate lifting of the crushing anxiety I didn’t even realize I had been living with for years. Depression and anxiety have been linked to sleep apnea and a small airway, both of which are common in CR patients [1].
I was unable to achieve deep, high-quality sleep for many years due to the significant lower jaw recession I experienced from CR. I would be woken up by choking on my own tongue during sleep when relaxation caused my airway to collapse. I would wake up in the morning and go to bed at night with a feeling of exhaustion every day, regardless of how many hours I slept.
During my waking hours, I was not able to escape the constant feeling of choking and struggling to catch a breath. In the afternoons, as the muscles in my face grew more tense from the day’s stress, my lower jaw would sit further and more heavily into my neck, and I would often find myself gagging and dry heaving due to the sensation. I could not wear shirts with a regular neckline because they worsened the choking sensation.
No Longer Recognizing Myself
My face changed to the point that I couldn’t stand the sight of photos of myself and stopped taking them. I became paranoid that people were talking behind my back about how bad I looked. The facial changes were the outside evidence of the complex underlying health issues, such as sleep apnea and an anterior open bite, that made my day-to-day life challenging.
Not being able to fully close my teeth and rest my mouth made me feel insecure and open to the world in a way that is difficult to describe to someone who has not experienced it. If smiling can make you feel happy, can having no control over the exposure of your teeth and tongue also affect your mood? I felt like an injured animal limping along.
Navigating Without a Map
Finding providers who understand the jaw joints enough to recognize and diagnose CR is a very long process for many patients, myself included. You are involved in a struggle that is incomprehensible -- and in many ways, invisible -- to people who are not going through it themselves, which can add to the feelings of isolation.
Many people also experience debilitating pain with CR or are unable to access medical care. Many insurance plans still expressly deny coverage for TMJ-related issues, leaving patients in the unfortunate position of having to take on an incredible financial burden to pay for surgery. Even for those who are financially able to pursue surgery, other obstacles remain, such as arranging care for young children or being able to take enough time off work.
My Tips
Everything I mentioned above adds to the enormous amount of stress, anxiety, and isolation CR patients can experience for long periods of time. If you have CR, chances are you’re dealing with uniquely difficult and isolating circumstances compared to people in your life not experiencing chronic, invisible illness. As you navigate CR, it is so important to tend to both your mental and physical health needs.
Here are some things that helped me while I was trying to find a diagnosis and set up a treatment plan. Most of my symptoms went away after surgery, but I continue to use many of these tools as they make my life better. Do you have something that helps you? Please share in the comments below.
Therapy
Seeing a therapist regularly can help you put things in perspective. I found it very helpful to talk through my worries about possible complications from surgery with my therapist. She also helped me process self-esteem-related issues caused by the changes to my appearance.
Meditation
Meditation is a scientifically proven method of addressing stress and anxiety [2]. I used Transcendental Meditation and the guided audio from Prepare for Surgery, Heal Faster by Peggy Huddleston. There are many free resources available on Youtube and the Headspace app.
Massage and Bodywork
These are integral parts of my routine for combatting stress and anxiety. Forward head posture and shoulder rounding are common in CR patients as we lean forward to better angle our airways [3]. These actions, however, cause structural misalignment and discomfort. I found that massage and bodywork helped me find a home in a body that I was not happy with.
Exercise
Many people with CR struggle with rigorous exercise due to their small airway. Walking daily and doing light exercise such as yoga and Pilates are good alternatives and they helped me get into better physical condition as I prepared for surgery.
Information
Get opinions from as many different surgeons and professionals familiar with CR as you need. The peace of mind this brings is well worth the expenditure of time and money. Ultimately, the treatment plan you choose is up to you, but finding knowledgeable people you trust to guide you through the process can increase your confidence in that decision.
Community
Sharing with others who are going through the same thing helped me feel less isolated [4]. Idiopathic Condylar Resorption Facebook group is a great place to meet people who are likely dealing with the very same issues as you.
If you are going through the diagnosis and treatment plan process, now is NOT the time to skimp on extra support and self-care. Since changes due to CR can occur over months or years, it is hard to notice just how ill you can become. We should treat ourselves with utmost kindness during this time.