Having primary biliary cholangitis (PBC) puts us at risk of having other autoimmune diseases, disorders, syndromes and chronic conditions. When I was first diagnosed with PBC I heard about how common it is to also have Sjögren’s disease. Since PBC wasn’t my first autoimmune disease, I was concerned about this risk — but as the years went on I dismissed it, and almost forgot how common and closely linked it is.
It’s been 11 years since I was diagnosed with PBC, and just last week my ophthalmologist confirmed that I have Sjögren’s disease. My doctor had been telling me I have dry eyes the last couple years (a common symptom), and we were aware of the risk with my other autoimmune diseases — but I still didn’t expect to hear the news.
A new diagnosis on a growing list
This is my fourth confirmed autoimmune disease, at age 45. On top of this all, I have other health conditions that are not autoimmune. Sadly, I don’t think I’m alone. As a matter of fact, I know I’m not alone.
When I got the news I actually laughed. I’m not sure if it was that nervous shaking of your head, I-can’t-believe-it laugh, or if it was just out of frustration. I am so tired of being sick, and sick of being tired.
This particular autoimmune disease causes dry eyes and dry mouth, primarily affecting the body’s moisture-producing glands. It’s also associated with fatigue, joint pain, dry skin and muscle aches. I definitely think many of the symptoms of PBC are similar.
Although being diagnosed can help validate the fatigue and all the symptoms that make daily life a struggle, it is still a mix of emotions. I’m not sure why, but I feel embarrassed to share the news with friends and family. I feel like people don’t take me seriously and think I’m some kind of hypochondriac just looking for another title to add to my growing list. I also feel guilt and shame. Invisible illnesses like PBC are hard for some people to understand. I don’t look disabled, but my body screams differently.
Even though I feel lonely, I know I’m not alone.
It’s so very important to find friends, even if it’s online strangers that are going through similar struggles. My fiance does not have any autoimmune diseases but he has been a rock with helping me manage mine.
I think it’s important for people with autoimmune diseases to spend their efforts building the best team of doctors and support inside and outside of the medical field. It’s important for our doctors to understand the conditions that may not be in their field. It’s important for us to learn about our autoimmune diseases, especially since so many of the symptoms overlap. It’s important to stay up to date on suggested blood work, testing and exams.
Moving forward, with a helping hand
I will continue to use my support system both at home and in my online communities. I will continue to educate myself and advocate with my team of specialists. Sometimes when I feel very overwhelmed, I just have to take one day at a time.
My hope is that everyone has someone to listen and hold them when they need it, because PBC is hard enough by itself without having any overlapping autoimmune diseases.
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