When we're first diagnosed with an autoimmune disease or chronic illness, we have to adopt a specific "operating system" to help us move through our new reality, right?
For example, we're asked, often over and over and over again, about the symptoms we're experiencing, when those symptoms first appeared, and what (if anything) provides relief. Because autoimmune disease and chronic illness is often invisible, it's usually up to us as patients to provide as much data as we possibly can.
However, even though we may eventually be diagnosed, start treatment, or find ourselves in management mode... that hyper-vigilance we've been trained to do doesn't always go away. It doesn't matter if we're no longer in immediate danger, the brain is still looking for any sign of a possible problem that needs to be solved.
Enter: My experience with healthy anxiety.
My friend Jenna (who is a therapist) was actually the first to let me know just how common health anxiety with autoimmune disease can be... like 12 years after I was diagnosed!
She told me, "With chronic illness comes an increasing awareness of our own bodies, including pain, energy levels, emotions, etc. Chronic illness management also requires increased activities around caring for our bodies. This focus on illness and illness-management can lead one to become hyperaware of the body and its physical sensations."
It's common for someone with autoimmune disease or chronic illness to be on high alert for any messages from the body. We're focused on noticing those messages and sometimes even oversensitive to that noticing. Meaning, we don't solely notice potential problems within the body but may also notice quite normal fluctuations, too.
And if you're constantly looking for symptoms or problems, it shouldn't be a surprise when you actually find them.
Jenna went on to share with me, "This hyper vigilance can make us more prone to health anxiety and symptoms like mood swings, anxiety, depression and overwhelm... which can then exacerbate our underlying chronic condition."
(Want to read up on this connection between autoimmune disease and health anxiety? This study talks about how depression and anxiety were observed with a higher prevalence in patients with autoimmune disease. This study considered the extent at which depression and anxiety are associated with autoimmune thyroiditis. This article talks about the link between anxiety and autoimmune disease and how the uncertainty that autoimmune disease brings is a huge trigger for anxiety. This study considers types of pain and their psychosocial impact in women with rheumatoid arthritis. And then there's one of my favorite authors, Sheryl Paul, who talks often about anxiety, including health anxiety and its core desire for control.)
I've personally struggled with anxiety (in all its glorious forms) for much of my life. But although anxiety is talked about more regularly these days, I still find people skimming the surface more often than not.
"Yeah, I have anxiety."
"I used to struggle with anxiety -- meditation was key."
"Sure, I've had a panic attack or two in my day."
I think it's really awesome that we're calling out anxiety for what it is (an intense fear of losing something we love) and bringing up conversation that shows just how common it actually is.
However, I also think it's important to take it a step further. To fully divulge what anxiety looks like and how it sounds. Because, anxiety doesn't solely take the form of worry around a test or public speaking. It's not just the fear of doing something for the first time or taking a big leap. Anxiety also includes some irrational-scare-you-to-the-bone thoughts.
So, this is for you if you think you're the only one!
>>> During my mid-teenager years, I thought tonight was the night. Either the house would burn down or I'd be kidnapped. I felt it. I thought it was intuition. (Even though the house didn't burn down and I wasn't kidnapped.) I'd lay awake for hours listening for any and all noises or going through safety evacuation routes in my head.
>>> When I was young, I'd think my parents were going to leave me in the store. (Or, take their masks off and present to me their alien selves.) I'm not sure I was even ever accidentally lost or left behind. But, every time we went to the grocery store, I'd think: "Now's the time. They'll walk down another aisle and just keep walking."
>>> Up until about two years ago, I'd get up in the middle of the night to use the restroom and think: "What if something sharp comes up through the toilet and stabs me?"
>>> Probably once a day for many, many years, I'd think: "What did I just feel? Was that stomach pain my appendix? Does it need to come out? Should I go to the hospital?" You'd think I would have learned, as the day before it was something that also required the hospital but totally did not involve my appendix. You'd think I would have learned that, despite Google's warnings or the impending doom that lives and breathes in medical chat forums, this was actually another form of anxiety (and my ever present desire for safety) rearing its beautiful head.
You see, I was diagnosed with Takayasu's Arteritis at age 14 and, over the years, I'd gotten used to feeling like I was always falling apart. (And I'd gotten used to looking for any bodily symptom to let me know that something had gone array... even when everything was fine.)
After all, those of us who've been diagnosed with autoimmune disease and chronic illness (or have experienced any symptoms thereof) are really in tune with our bodies... for better AND worse.
Before I realized that what I was experiencing was anxiety, I was instead convinced I was tasked with finding (and solving) problem after problem after problem. As in, I would spend a LOT of time on Google searching for information about whatever new symptom I'd just found.
Sure, I knew this symptom could be nothing... but I also knew that it could totally be something. I mean, I had been diagnosed with a rare autoimmune disease. I also had both tear ducts block up at the same time. So, anything's possible right? (At least, this is how I justified my fear.) As much as I wanted to believe that whatever symptom I had noticed was nothing, I couldn't help but also ponder all the "what ifs" out there too.
In one week, I was convinced I had two serious, and rare, health conditions. (I'm not going to list them here because that's not helpful, ha!)
And in that same week, I found myself almost wishing there *was* something wrong. It was like I wanted a physical reason to feel mentally and emotionally exhausted. A reason to be able to "check out" and not do anything. It was as if I wanted physical proof for how spent I felt.
I know that some people have referred to those of us with anxiety or depression as "weak-minded". As if we can simply "get over it", "just be happy", or "stop worrying". But in reality, we are some of the strongest people you'll ever meet. We're fighting. Every single day.
(And so, sometimes we're just tired of fighting.)
It took me many years to move through my health anxiety and, to this day, I still sometimes have to intentionally act in spite of it.
But here's what has helped the most:
First and foremost, I do my very best to keep off Google (or any search engine).
This is no easy task, as getting on Google and searching whatever symptom I've noticed is very, very enticing. But typically I'm not just searching for evidence and proof that nothing's wrong. Sure, yes, on the surface this is what I want to find. But if I dig a little deeper I'm aware that part of my brain (the one that's doing everything it can to keep me safe) also wants me to take seriously whatever symptom I'm researching... just in case.
(Note: Of course, I am not suggesting you don't make an appointment if that feels right and true for you. There's a very big difference between talking with your doctor and hoping online to chat with a whole bunch of patients.)
Next, I call it out and give it a label.
Something to keep me "safe".
Calling out anxiety helps make it feel valid and manageable. It reminds me that I've been here before. It reminds me that things were probably okay the last time I was here. It reminds me that others have been here and made it through. It also reminds me that what I'm noticing may not actually be what I first feared it to be.
Then, I take a page out of Sheryl Paul's book and ask myself what else this symptom could be. Specifically, I love to ask: What else could this mean?
Typically, it's not just the pain we're feeling or the discomfort we notice that spikes our anxiety. Sure, we want to feel good and we don't enjoy being in pain. But usually what makes whatever I'm experiencing 10x worse are all the stories I create around said pain / discomfort / fluctuation / etc.
It's not just that I want to stop noticing changes in my body... it's that I also want to stop catastrophizing each and every one. I want to stop going to worst case scenario, deciding that something is really, really wrong and spiraling down the rabbit hole of how much my life as a whole is going to then change.
(Because we don't just notice a potential problem and work on a solution, right? We often notice a potential problem and then start immediately thinking about all of the ways in which this problem is a very bad thing. We think about what else will probably change and what we probably won't be able to do and how we're probably always going to sick and how we probably won't ever have the time or energy for the life we actually want to live.)
Asking "what else could this mean?" is a way of stopping the story I was telling myself in its tracks. It's a way of creating new stories with endings I might like a little bit better.
Basically, "what else could this mean?" is a great way of bringing some more possibility to the table. (Instead of deciding that something is wrong and going full force down that road and only that road.) This possibility is really helpful because then we can turn to our intuition for help in how to move forward. (It's also, of course, helpful to work with doctors here, too!)
Get grounded and tune into your intuition.
I don't recommend asking this question right when you notice a symptom or problem in the body or right after doing anything that leaves you feeling anxious, overwhelmed, sad or scattered. Instead, ask yourself this question after doing whatever activity leaves you feeling the most at peace, grounded and safe. For some, that might be after exercising. For others, that might be after journaling, meditation or a walk in nature.
Once you're there, ask: "What feels right and true for me?"
Of all the possibilities on the table, which feel the most right and true for you? What feels like the right next step to take? It might help to journal, write a letter to self or God or process with a trusted friend, doctor or professional.
Moving forward, start training yourself to see health.
The tools above are great tools that help us feel better in the moment, but there are also things we can do in general to help ease our anxiety. We can turn to meditation, restorative yoga, journaling and walks in nature (for example) and we can also train ourselves to look for health rather than illness
Since what we believe, or what we look for, becomes what we see... it makes a lot of sense that I kept seeing "problems" everywhere. Plus, since seeing and fixing those "problems" kept me from doing the big scary work, I held onto this outdated pattern for awhile.
You see, having an "illness-based" operating system is great when we need to be diagnosed and start a treatment plan. But this way of operating becomes a problem when we want to have health. Because the operating system that helps us during illness is not often the same operating system that will help us have health. Not only do we have to train the brain to redirect its search for those signs of bodily problems but we ALSO have to start cultivating an identity of wellness. We have to believe we are people who get to be healthy.
And that's really hard when all you've recently known is anything but.
So, don't be afraid to get support.
As I'm sure you can guess, I wholeheartedly recommend speaking with your doctor and considering a consultation with a mental health professional. I can't recommend my friend Jenna enough and, if you'd like to see if she's a good fit for you, you can sign up for a free consult with Jenna or join The Wellness Boulevard.
Jenna teamed up with me inside our "guest expert" section of The Boulevard to chat on everything from adjusting to illness to autoimmune disease & grief to the role of self-love when trying to heal. Plus, she shared a chat with us titled, "You're more than the sick one or the warrior" to discuss this hyper vigilance common with illness and anxiety. You can get immediate access to these classes by signing up for a membership here! By doing so, you'll also get access to journaling prompts, restorative yoga classes and coaching videos with me on how to rewrite your operating system to be one better aligned with health.