Beyond the Flare: Managing Anxiety Around Health

My heart skipped a beat. I took a deep breath and then the anxiety hit. I muttered to myself, “What’s wrong with me? Is my lupus messing with my heart now?” I took another deep breath. Talking out loud to myself, “What if I am having a heart attack?” The way my mind took over with a wave of anxiety ridden negative thoughts was overwhelming.  

“Get yourself together, girl YOU ARE OKAY!” I had to scream it, in order to believe it. In fact, that scream scared the anxiety out of me. I knew at that point I was dealing with some stress around my health.

Understanding anxiety around health

First, I worked to understand what I thought I was dealing with. I knew about health anxiety but didn’t feel that I was dealing with that. What I felt was familiar and that was stress around new symptoms.

The American College of Rheumatology reports in a 2022 study that lupus takes an emotional toll on people with lupus. In this study more than half (54 percent) of study participants struggled with moderate-to-severe anxiety.¹

The Anxiety and Depression Association of America defines health anxiety as, “a fear and preoccupation with the belief that one has, or is in danger of developing, a serious illness like cancer, ALS, or a heart attack. It involves the misinterpretation of normal bodily sensations as dangerous.”²

Because of this information and my own experience, it became evident to me how important discussions around anxiety and health is for lupus warriors.

Types of health anxiety

Each of us will probably experience anxiety around health differently. As we battle lupus, this hardly ever seems to stem from our known condition. Anxiety around health, in my case, mostly stems from the unknown. It manifests in my head as the fear of new symptoms and the intensifying of already existing ones.

What if they intensify to the point of no return? I mean, some days I’m flaring like it's a no-hitter day for a pitcher in baseball. And when anticipatory anxiety leads to the pitiful need to self-soothe with the mantra, "Oh it could be worse," it's a sign that my emotional health could use a little more attention.

Some other ways health anxiety manifests in my life may be felt by others too. First, the fear of flares. I know I can sometimes worry more than I should about when the next flare-up will occur. The unpredictability of lupus can heighten this fear. Second, the concern about medication side effects. This is a big one.

It’s so easy to become fixated on what could go wrong. Then with all of the chatter from online influencers about the dangers. It can really be overwhelming to deal with day to day.

Finally, the biggest anxiety is the worry about long-term effects. So much anxiety can be built up about how lupus could possibly worsen over time or that serious complications could come.

Managing health anxiety

To manage anxiety around my health, I found how crucial it has been to shift my mindset. Instead of saying, “what if this pain means something serious?” I began to say, “my pain doesn’t always mean something serious. It could be a normal part of everyday living.”

Rather than saying, “what if my condition suddenly gets worse?” I began to say, “my healthcare team and I are proactive in managing my condition. I’m receiving the best care. I am doing all I can to stay healthy in spite of lupus.”

Above all, I learned to concentrate on the ways in which I have been successful in navigating my health journey. I have learned to replace my negative thought patterns with more realistic scenarios.

Finding effective methods

It is crucial for me to find effective methods of managing health anxiety to maintain my well-being. Certain strategies have worked for me and may resonate with you as well.

Mindfulness and relaxation techniques

Engaging in mindfulness and relaxation techniques, like deep breathing and meditation, has been sweet game changer for me. When I remember to do this simple practice, I am more grounded, and my health anxiety diminishes.

Regular communication with my healthcare team

I make it a point to have a two-way dialogue with my doctors. I ask questions, express concerns, and share what’s on my mind. Doing so in a regular, consistent way really helps me feel like I’m in control of both my health and my health decisions.

Educational empowerment

I am no longer willing to stay in the dark about lupus. I understand it’s a complex illness with a spectrum of symptoms. Ultimately I  work hard to learn my body and know what helps and hurts me.

Support system

I am beyond grateful to have a support system that’s not just made up of friends and family, but also one composed of other lupus warriors.

Fear lessening

Whether I like it or not, lupus is now part of my life. There’s no going back. I can only move forward. I have to understand lupus, how it affects my body and what I need to do to stay healthy in spite of its attacks.

It's important to realize, anxiety around health is a common challenge for lupus warriors. Therefore, understanding the types of anxiety we face and replacing worst-case scenario thoughts with realistic ones can make a big difference. By staying informed, practicing mindfulness, and seeking support, we can manage anxiety and maintain a sense of calm. Remember, we are not alone in this journey. With the right strategies and support, we can navigate health anxiety and focus on living our lives to the fullest.

Have you ever had anxiety around your health? Let me know in the comments how you navigate around it.