Introduction
Hey, beautiful soul! I hope you are doing well and staying warm & cozy. Do you constantly worry about your lichen sclerosus? Do you spend a lot of time worrying about your LS progressing? Perhaps you find yourself obsessively checking your vulva for changes in skin texture or color? Is the Google search engine one of your best friends? If so, you may be struggling with a form of health anxiety.
The topic of this post is health anxiety and how it can affect folks with lichen sclerosus. I begin by explaining what health anxiety is, including its perceptual, cognitive, and behavioral components. After, I dive into the ways in which health anxiety can manifest with lichen sclerosus and then share my experience with health anxiety. This is part 1 of my series on health anxiety, so make sure you subscribe to The Lost Labia Chronicles so you are notified when part 2 is available. Part 2 will be a more practical post wherein I discuss tips and tricks for working with health anxiety.
What the Research Says about Health Anxiety
Health anxiety is also referred to as illness anxiety and hypochondriasis. I use the term health anxiety to refer to fears and worries about being ill or becoming ill (NHS, 2020). Importantly, health anxiety doesn’t involve occasional worries about health. Instead, these worries and fears are chronic and persist over weeks, months, or years.
Health anxiety occurs when a person becomes aware of new/different bodily sensations or changes to their body. For example, this could be an itch in a new location, a change in heart rate, or a change in body temperature (Lebel et al., 2020).
Important Components of Health Anxiety to Be Aware Of
Perceptual Components
Perceptually, you may be hyper-aware of sensations in your body. You may experience laser focus on the perception of certain bodily sensations. For example, our bodies are constantly in flux and changing. However, many of those changes go unnoticed. Conversely, for folks with health anxiety, the subtle changes that many do not perceive will be amplified. A mild temperature shift for one person could feel like a huge shift for someone with health anxiety.
Cognitive Components
Cognitively, you may be more prone to catastrophize those bodily sensations. For instance, let’s continue with the temperature shift example. You may suddenly feel an increase in body temperature. This can lead to thoughts such as, ‘Do I have a fever?', ‘Is this a sign of infection?', ‘Is this X disease (where X is a placeholder for some disease you’ve been worried about having)?', or ‘Is this a side effect of my medication?' Importantly, these thoughts are not neutral; they are accompanied by negative feelings of anxiety, distress, or panic.
Behavioral Components
In response to the perceptual sensations and their associated thoughts, you may then act in certain ways. For example, if you experience a shift in body temperature and you think ‘is this a fever' or ‘do I have disease X', the worry and distress associated with this may cause you to check your temperature (or impulse buy a thermometer if you do not have one available). Additionally, you may then go to Google to search for what a change in temperature means. In your search, you may find results that suggest you could have an infection or illness, which may then prompt you to call your doctor or go to urgent care, convinced something is seriously wrong with you.
The Take-Home Message
Briefly, health anxiety involves distressing emotions such as fear, thoughts of danger such as believing your illness is life-threatening, and physiological arousal such as increased heart rate, breathing, and blood pressure (Simard et al., 2013).
Health anxiety is not a one-size-fits-all condition. It exists on a spectrum, and the intensity of health anxiety can vary from mild to severe, and can be debilitating and chronic (Lebel et al., 2013). Thus, if you happen to be someone who experiences some of the components to a milder degree, this does not invalidate your experience with health anxiety nor your struggle with thoughts and behaviors associated with health anxiety.
Finally, folks with chronic illness tend to be more likely to have/develop health anxiety as a kind of trauma response to living with chronic illness and pain (ibid).
How Health Anxiety Can Manifest with Lichen Sclerosus
Living with lichen sclerosus can really do a number on your mental health. I have blogged about lichen sclerosus and anger, fear and relationships, and fear of developing vulvar cancer, as well as the various aspects of grief with lichen sclerosus.
In addition to these and other mental health struggles, lichen sclerosus can bring on or amplify already existing health anxiety.
This can look like:
- Obsessively checking your vulva for changes in skin color and texture.
- Taking multiple pictures a day of your vulva to monitor changes.
- Worrying that you have vulvar cancer or will develop vulvar cancer.
- Worried that your doctor missed something on your blood work and/or physical examination.
- Fears about your lichen sclerosus progressing to a severe case.
- Worries that your lichen sclerosus is progressing.
- Fears about medications and/or treatment side effects.
- Obsessing over your diet in order to reduce symptoms and ending up with a super-restrictive diet.
*This list is not exhaustive. These are only some of the many ways health anxiety can manifest when you have lichen sclerosus. If you feel comfortable, please share your experience on how health anxiety shows up for you in the comments section.
My Experience with Health Anxiety
I have struggled with health anxiety for years. I have better control over it nowadays, thanks to therapy, medications, and some other tools I will discuss in my next post, but it was definitely all-consuming for a long time.
*I will have a more informal YouTube video where I casually chat with you in more detail about my experience, so make sure you subscribe to my channel and give that a watch when it’s up. This will focus on my overall journey with health anxiety, not just explicitly in relation to lichen sclerosus.
How Getting Diagnosed with LS Made Everything Worse: Obsessive Checking and Google Searching
I have struggled with anxiety since I was a little girl. I have generalized anxiety disorder, panic attack disorder, health anxiety, and PTSD. Thus, I’m no stranger to anxiety and have struggled with it on and off for most of my time on this planet.
When I was diagnosed with lichen sclerosus, my anxiety became amplified. I quickly fell into obsessive habits I felt I had no control over. I would obsessively check my vulva, sometimes over 40 times a day. It was all-consuming and deeply distressing. I would convince myself I was losing more anatomy or that things were getting worse. I was on Google all day long, googling every single sensation I felt on my vulva. This only increased my anxiety.
The Fear of Developing Vulvar Cancer
Because I had a 9-month wait time to see my gynecologist, I went a long time without support or answers. I became absolutely convinced I had vulvar cancer; I was convinced I was dying and it may be too late for me by the time I could be seen. These thoughts were so powerful I even filmed goodbye videos for my friends and family. The fear of dying from vulvar cancer wasn’t just scary, it was terrifyingly real.
How Health Anxiety Impacted My Daily Life
My thoughts, fears, and worries were obsessive, relentless, and caused me distress. I was unable to focus fully on tasks, work, or my relationships.
For instance, while my husband was talking to me about his day, my whole body was tense with paralyzing fear and a deep desire to bolt out of my seat and google the latest sensation I was feeling. I was laser-focused on any sensation in my vulva, such as an itch in a new place, stinging, or another paper-cut-like sensation.
In addition to the fear and anxiety, I also felt guilt and shame about feeling this way. I felt guilty that I couldn’t be fully present with loved ones because of my obsessive thoughts. Further, I felt shame about feeling the way I did. I knew it was logical, and I felt like a huge irrational burden to those around me. As an academic and someone who tends to be quite rational, I often feel ashamed when I give in to irrational fears in the way I do. Thus, health anxiety for me was more than fear and anxiety, it was also guilt, shame, and sleepless nights.
Important Note
It is important for me to note this is my experience with health anxiety. Your experience may look different, and that is OK. I share my experience to help others feel heard and to raise awareness about health anxiety and lichen sclerosus. However, I acknowledge everyone’s experience is unique and will vary.
Health anxiety is very real; don’t let anyone tell you otherwise. I have it, and many others with lichen sclerosus struggle with it as well.
Conclusion: You Are Not Alone
In sum, if you struggle with health anxiety, know that you are not alone. Many of us LS warriors out there struggle with this. Heath anxiety is very real and it can be deeply distressing (at least it has been/is for me). In my next post, I will discuss some of the techniques and strategies I used to help turn down the volume on the intensity of my health anxiety – stay tuned!
Don’t forget to leave a comment sharing your experience and what you struggle with.
Reach Out to Me
If you want to chat with me about health anxiety or Lichen Sclerosus, I can be reached at:
Instagram: @thelostlabiachronicles
Facebook: @TheLostLabiaChronicles
Email: lostlabiachronicles@gmail.com
Virtual Meetups
Do you want more support in your journey with Lichen Sclerosus? Consider joining our Lichen Sclerosus Support Virtual Meetups. We meet bi-weekly, every other Saturday from 2-4 and 7-9 pm EST. These meetups are a safe space for you to share your story, cry, celebrate, vent, ask questions, and be a part of a community of support. Click the button below to sign up!
Sign up for Lichen Sclerosus Support Virtual Meetups
References
“Health Anxiety”, NHS, Page last reviewed: 14 October 2020. https://www.nhs.uk/mental-health/conditions/health-anxiety/
Lebel S, Ozakinci G, Humphris G, Mutsaers B, Thewes B, Prins J, et al. From normal response to clinical problem: definition and clinical features of fear of cancer recurrence. Support Care Cancer. 2016;24(8):3265–3268. pmid:27169703
Simard S, Thewes B, Humphris G, Dixon M, Hayden C, Mireskandari S, et al. Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies. J Cancer Surviv. 2013;7(3):300–322. pmid:23475398
Disclaimer:
*The Lost Labia Chronicles does not provide medical advice or engage in the practice of medicine. The information provided by The Lost Labia Chronicles is for education and entertainment purposes only and does not under any circumstances constitute medical advice. Please consult with your healthcare provider before making any changes to your healthcare plan.
I’m really glad you are discussing these issues, as even with best friends it’s difficult to share and get support when the subject is so personal. This can be very isolating. Also our generation were very ill prepared for menopause.. who knew anything like this could happen as our mother’s generation were not encouraged to share, and too many jokes at female expense. Let’s hope things improve for our daughters and granddaughters.
Thank you so much, Claire. I appreciate you taking the time to read my blog and leave a comment <3. I SO agree with you. We weren't prepared or educated about our bodies, how they change, etc. Hopefully, we can change this for future generations because we deserve this knowledge. Thank you for your support; have a beautiful day.
[…] Before you read on, be sure to check out my last post where I described what health anxiety is and what the research says about it. […]