This story includes mention of suicidal ideation, which may be disturbing to some readers. If you or someone you know need help, consider calling the National Suicide Prevention Hotline at 800–273–8255 or the Trevor Project Hotline (for LGBT youth) at 866–488–7386.
As a child, I constantly dealt with racing thoughts, spinning doubt, and unreasonable fears. Of course, as with most things at the time, I assumed this was something everyone experienced. I didn’t realize there was a name — and, more specifically, a medical condition — for what I was feeling: anxiety.
At the same time, I knew I was different from my peers, but not necessarily because of the anxiety. I talked too much, often about personal aspects of my life that made people around me slightly uncomfortable. I was overly affectionate, which also made people uncomfortable. I didn’t understand social cues, leading to me to unintentionally say or laugh at something that would hurt someone’s feelings and not realize it was wrong until the silence hit.
I spent so much time working through — and worrying about — all these awkward and uncomfortable social situations that it never occurred to me that maybe I was worrying too much. Or at least, more than others would in my situation.
As I got older, I became more comfortable with myself and my uniqueness. I know I am not everyone’s cup of tea, and I am okay with that. My social skills have gotten better because I’ve worked hard to improve them. I’m more comfortable speaking in front of groups, particularly at medical conferences and art venues. I’ve also learned how to connect quite deeply with others through social media and my artwork.
But that worry — that parade of doubt and fear — never went away. In fact, it only got worse after I was diagnosed with rheumatoid arthritis in 2011 and then with fibromyalgia in 2012.
How My Diagnoses Made Me More Anxious
In a matter of months, my health became volatile, changing from day to day and even hour to hour. I flared nonstop for two years. There was never a time when my body was calm and my joints were free of pain. In the moments where the pain was worse than normal, the anxiety got exponentially worse as well.
Not only was I upset that the recommended treatments weren’t helping my body, but I was scared that I’d lost functionality in my body. Even after I found a better treatment, the anxiety remained. I felt like I was never going to get better and would imagine the worst possible outcome (like losing my ability to walk) and obsess over it.
This was no way to live, and I knew it — but I didn’t know how to get out of this mindset.
I certainly experienced intense low points before being diagnosed with multiple chronic illnesses. I have known great heartache and great loss from a very young age. And in those moments, my anxiety was like a fly zipping around my head. When the anxiety became too much, it would trigger periods of intense, deep depression. I began to find ways to work through it.
Trying to Push Through My Anxiety
Before I was diagnosed with rheumatoid arthritis, physical activity would drain me of the struggle in my brain and allow me to think more clearly. Running was the most helpful. It allowed me to handle the intense throbbing, humming, swinging of anxiety in my body. I’d usually follow that up with yoga to further calm and center me. Calming and handling my anxiety helped keep my depression more in check.
But that only did so much.
No matter how many miles I ran or minutes I spent in savasana, I couldn’t stop the anxiety from showing up. It became like a bee, buzzing in my ear and stinging me when I had difficult decisions to make or when change was happening in my life.
But, again, I worked around and through it.
Art and being creative became my sanity during those early years of my disease. Just sitting down and zoning out on recreating something beautiful focused my mind and calmed my heart. That is also when I began writing for CreakyJoints. Writing about my struggles helped me to process them, work through them, look at them more clearly.
Below is a piece of art I created about my anxiety specifically. It represents the frenetic energy and chaos of anxiety inside me. I worry about everything and nothing, so it’s like I have balls of energy bouncing around inside me all the time. With no exit, all they do is bounce, causing chaos in relationships, decisions, and in the way I think.
Over the years, I went through treatment after treatment for my rheumatoid arthritis, until I finally found medications that worked for me.
Though my quality of life began to improve, my anxiety did not. The bee just got closer and louder until it seemed like it made a home in my body, stinging me from the inside out.
What My Anxiety Feels Like
Everyone’s experience with anxiety is different. Not to mention, there are several types of anxiety, such as social anxiety, generalized anxiety disorder, panic disorder, and more. That further contributes to differences in experience. For me, my anxiety manifests in the form of:
- A racing heart
- Triggering my IBS (irritable bowel syndrome)
- Shortness of breath
- Shaking and trembling
- Inability to think straight or focus
- Avoiding touch from others
- Crying episodes
- Obsessive, racing thoughts
- Not hearing those around me talking to me
I also experience panic attacks as a result of my anxiety, which usually include slurred speech and a drop in blood pressure.
How the Pandemic Broke Me Mentally
I thought I was managing my anxiety well enough I was active on a regular basis, which helped my daily anxiety and depression levels, as well as helped with my fibromyalgia pain. I was keeping a regular sleep schedule. I was careful with my diet and had lost weight. I was creating art to express my chronic illness experiences. I was active in the patient advocacy community and building solid relationships with folks who understood my struggles.
Then the pandemic happened. I am part of the #HighRiskCovid19 group because of my multiple autoimmune diseases and immunosuppressant medications, as well as my moderate asthma, heart issues, and weight.
Stuck in my apartment, I began obsessing about the coronavirus; doomscrolling through social media and news outlets to the point that I lost focus at work. At night, I would cry as my mind raced with thoughts about getting sick and being hooked up to a ventilator. I stopped having fun and laughing. I became impatient with my partner, pushing him away, picking fights, and moving through our relationship listlessly.
My heart would race, and I couldn’t calm it down. My thoughts would spin out of control, and I struggled to reign them back in. This triggered a deep depression, which eventually led to thoughts of suicide.
I knew then that I needed help.
Though Therapy Has Helped, I Still Struggle with Anxiety
I needed a therapist. I started with a free support option available through my job. They listened and were kind during the call. A few days later they sent me an email with some local counseling centers that took my insurance and that did telehealth visits. I did more research,
looking up the counseling centers online to see what they focused on and if they could help with my specific struggles. Not everyone understands the constant struggle with pain and illness that patients face.
I chose my current therapist because she specializes in cognitive behavioral therapy, which is when you work to isolate unhelpful thoughts and behaviors, then strategize ways to think or behave differently. I found this helpful, given my analytical and logical mindset. Through my work with the therapist, I have been able to learn my triggers, signs of my anxiety ramping up in a situation, and unrealistic thoughts or ideas — and how to handle them.
For example, I now work deep breathing and meditation into my anxiety attacks. I also redirect my anxious energy into a calming activity, like crochet or drawing. I took up crochet during lockdown and the rhythmic stitch work calms my anxiety like running used to. There is nothing like it for me.
I work from home so if I get really upset and anxious, I take 15 minutes to go for a walk outside. Walking releases those endorphins and helps me think more clearly.
Through this, I’ve become more in tune with my feelings, which allows me to tell my partner that I need time alone to decompress. Sensory overload is definitely one of my triggers.
After a year and a half of work, the depression is starting to subside, but unfortunately, the tools I learned in therapy haven’t helped as much with my anxiety.
The other day, I could feel the anxiety building in my body. I did everything in my power to keep my body from shutting down. I came so close to having a panic attack, but was able to lower my anxiety at the last minute. It still wrecked me. The heightened emotion wore me out so deeply that I felt like I had been run over by a truck. I had to call out of work, and it took me almost a day to recover.
My therapist recognized this and has been encouraging me to get a formal diagnosis from a psychiatrist so I can get medication to work in tandem with therapy. I’m in the process.
Why I Want to Be More Open About My Mental Health
Growing up, many of us hid our emotions. Talking about how we felt was just not an option. My home life was toxic and very difficult.
I spent much of my childhood hiding how I felt, because it wasn’t in my family’s nature to talk about emotions. And I thought everyone lived like that.
As I got older, I became more and more unapologetic about who I am. I didn’t want to hide any more. In my twenties, I started expressing more of my inner thoughts and struggles. But I found that most people could not handle what was happening inside of me. So, I was still selective about who I opened up to.
As I began to accept myself, I stopped caring about what other people thought and started looking for people who wouldn’t shame me for who I am. My chronic illnesses gave me the courage to be bold and be selective. I didn’t have energy for toxic people. And I didn’t have energy to hide my struggles. If someone can’t handle my struggles, then I can’t have them in my life.
Now I am not afraid to tell others about what I’m going through or when I need help. I want to show others that they are not alone in their struggle with anxiety or depression. Maybe a fellow chronic illness patient didn’t grow up with anxiety, but are experiencing symptoms now. They don’t have to be ashamed or to settle, thinking it is just their disease, just the way life has to be.
Help is out there for us. And maybe if I am open about my struggles, it will help others come forward with theirs. No one deserves to be afraid or ashamed of their struggle with anxiety or depression.
Get Mental Health Support
We understand how difficult it can be to cope during these uncertain times, especially when you are living with chronic illness. It is important to talk to someone who can help. You should contact your primary care physician or your insurance provider to learn about the supportive resources that are available to you. Here are other mental health resources for your reference:
- To find local support groups and services, you can call 1-800-950-NAMI (6264) or email email@example.com. The National Alliance on Mental Illness HelpLine can be reached Monday through Friday, 10 AM to 6 PM ET.
- For a counselor or therapist in your area, view the resources page at Mental Health America: Finding Therapy.
- If your mental health concern is an emergency for you or someone else, you should call 911.
- If you are having suicidal thoughts or have or are thinking of hurting yourself, you should call the National Suicide Prevention Lifeline’s 24-hour toll-free crisis hotline, 1-800-273-TALK (8255).