The Underlying Paranoia That Can Come With Chronic Illness

It started with random twitches when I was 13. I’d had a traumatic experience a couple months before the twitches began which I never discussed with anyone. It took a couple months of testing to figure out what was wrong, and doctors initially thought leukemia, but with more testing, the final diagnosis was lupus. Within a month, nephritis was added.

My chronic illness has given me plenty of challenges, plenty of situations I wish had gone differently, but it’s also given me a constant attitude of gratitude. I’ve been blessed with another year of continued remission from my 21-year battle with lupus nephritis, although that doesn’t come without symptoms or side effects. Unexplainable health issues, being that select one person in a statistic and constant pain will always be present in my life, remission or not, courtesy of being autoimmune.

The truth is, any chronic illness, especially autoimmune, can never truly be completely silent. Being autoimmune just means you’re completely open and vulnerable to anything and everything that can affect you. This means a normal cold can last you over a month, or turn into pneumonia. This means that a small paper cut or knick on your leg from shaving can take weeks to fully heal. This is also why many people with one autoimmune illness tend to develop additional illnesses as well. These things are expected, these things are part of life with an illness, right?

Know what else can be part of life with an illness? Paranoia. The underlying paranoia that resides deep down within me. I can say I’m totally fine, I can believe that random symptoms don’t cause me to overthink or worry that my disease is flaring or something else is going on. But the paranoia is there, no matter how much I try to avoid or ignore it.

For me, the paranoia struggle is real when I go through periods where I begin losing an abnormally large amount of hair. That was one of the biggest symptoms for me when I went into a major lupus flare back in 2009, so losing hair today makes me relive all of that fear. That paranoia, that fear, is valid. I don’t let it consume me, but it is still there. But unlike 2009, my disease is not active now, and I’m in my fifth year of remission. So when I do lose my hair, I look at everything that’s going on in my life as a whole. Am I under stress? Am I lacking something from my diet? Is this something I can control, or a symptom of something that is out of my control?

My underlying paranoia is there before taking blood tests or meeting a new doctor. It’s there when I go in for an MRI or scans, if I change my medication, or if I undergo traumatic stress. Because I know that with just one off marker in my blood, one new treatment plan from a doctor, one questionable scan, new meds or stress, my life can dramatically shift, causing all of my progress to be put aside. I recently had to take full blood tests to check up on my lupus and kidneys. I’ve had a few months where I’ve felt unexplainably off in some ways, so I had a small worry that something wasn’t right. Maybe it was stress, maybe it was trying to do too much all the time, but whatever the reason, a little worry was lingering.

The tests came out perfect, and I bawled when I hung up with my doctor. Thankful to be in #RemissionYear5, thankful to be able to continue this healing journey, thankful to connect with others and bring them hope.

As much as no one particularly enjoys getting blood tests or scans or meeting with doctors, these moments for me are moments of growth. They are the moments in which I am reminded that the only things I have control over are how I handle what’s presented to me and how I choose to move forward. They are the moments that remind me I am exactly where I’m supposed to be. The moments that comprise each chapter of my life. Over the years, I am constantly reminded that my personal struggles have made me who I am, and I’m thankful for all of it.

Our lives are made up of different moments, chapters and experiences. Each trial and triumph is unique. Each illness, symptom and reaction is different. Acknowledge any fear and paranoia that is present… but do not let yourself fall prey to it. Remember to not let the challenging times overlook the good times. And although your illness is a part of you, you are not your illness. But most importantly, never forget that you are strong and so much more than a chronic illness.