Chronic illness? Have faith in medicine.

I am healthy, a mom of two boys, a wife, and an emergency medicine PA for the past 12 years. I don’t just say I’m healthy to say it, but I really am. I’ve never taken medications, until now. It’s New Year’s Eve, and I’m scheduled for my injection. I grab my sharpie and write injection on the 31st. I suddenly didn’t know whether to laugh, cry, or be angry. I have become the patient.

My back pain began in my very late teens. It would flare lasting weeks at a time and then seem to disappear, but would always eventually rear its ugly head. A deep nagging pain. Several times throughout my life, I would see a chiropractor or get a massage for this pain when I couldn’t manage it at home with the typical rest, ice, and NSAIDs. My family and I always joked it was probably from that time I went bungee jumping in Mexico.

Excuses.

My pregnancies were tough, especially the last one. My pain was terrible. I always had a good excuse. I was petite and carrying a big baby. I work in an ER, and we are constantly bending over in awkward positions and lifting patients. I had a toddler who I carried on my hip. I ran or exercised too hard.

I’m not the first or last medical provider to brush off their symptoms. Maybe it’s because we know too much and cannot think about the imaginable. Maybe it’s because we are programmed to first and foremost take care of others. It’s a profession where you don’t call out sick. We have a job to do, and it’s to take care of others and our team.

I woke up one morning with a constellation of symptoms I couldn’t ignore, diffuse joint pain. It hurt to wash my hands, walk, breath. My back pain was now inexcusable. A few days later, I saw my PCP. We agreed it was likely all viral, maybe Lyme. The next several months were rough. At times, I couldn’t walk at all and completely hunched over from the pain or crawling around the house because it was more comfortable than weight-bearing. I had so many lab tests. Multiple MRIs and an EMG for bilateral peripheral neuropathy that suddenly developed. A skin biopsy for a rash. It was daunting and time-consuming, to say the least. I had suddenly become the patient; it felt strange and unusual. I hated it.

The MRI of my sacrum confirmed the diagnosis of ankylosing spondylitis. I had diffuse erosions and bone marrow edema. After reviewing the results with my rheumatologist, she looked at me and said, “You have to treat this, you cannot let this go on any longer like this.” She would start me on biological injections. My choices were limited because, in fact, I had been diagnosed with Lupus as well.

We walked out of the doctor’s office, and my husband smiled and said, “Good, right?” Tears immediately streamed down my face. I wanted to scream, “Nothing about this is good!” I walked out with two major diagnoses, both with their own serious complications. My treatment would be dual immunosuppressants. My risk of not treating was higher.

So angry.

I like to fix things. I work in a profession where I can fix things. Kids fall off their bike and need sutures, an acute allergic reaction, an asthma attack, a dislocated joint, the list goes on and on. My condition is treatable but is not curable. It can’t be fixed. There is a huge frustration piece that comes with this. These medications will help with the symptoms and lessen the degree of illness, but it will always be there.

As I approach the end of the year, I sit here feeling comfortable for the first time in months. The medications are working! During my treatment phase, I opened my mind to acupuncture. It has significantly helped with the fatigue aspect.

My neurologist recommended high doses of B12 and alpha-lipoic acid, which have made an impact on the neuropathy. I’ve made several lifestyle modifications. I can’t do what I once could, but I am challenging myself to find new ways to make my body stronger. I cut back on work because sleeping routine hours made me feel significantly better. I have found an amazing team of autoimmune doctors who are working together to care for me.

I look back and think of all the appointments my husband accompanied me with. My mother stepping in to fill my role when I couldn’t. My wonderful family and friends always reaching out to check in on me. My coworkers letting me just vent. My boss encouraging me to take time. Changing the way I actually listen and having an increased compassion for my patients. A new appreciation and respect for the family or friends accompanying them. Being stronger than I had ever thought I could be. These things don’t make me angry.

When the diagnosis came, I was in such a low place. I talked to my sister on the phone that day. She didn’t have much to say, but what she did say still resounds with me daily. “It’s going to be OK, Katie, have faith in medicine, it’s what you do.” I think of that sentence every day as I swallow my pills or inject my thigh. It brings me hope and lessens the burden to know that so many medical advances are happening daily.

If you have been diagnosed or dealing with a chronic illness — medical, mental, or addiction — have faith. It’s definitely not easy, but there is hope. There are providers and resources to help with every turn. Also, cut yourself some slack. This is hard … be patient. To the family members, it really helps just to listen and be present (you don’t need to say much). Have faith in medicine; it’s what we do.