Greater Awareness. Increased Action.

“I’ll be honest with you, Lindsey. I had to look up your syndrome before this appointment,” the doctor bashfully admitted. “I have never seen or heard of CLOVES syndrome.” Though she seemed slightly embarrassed by her lack of knowledge, she found comfort in my silent response. I warmly grinned and nodded my head, indicating that I certainly wasn’t surprised by her confession. She continued, “Your smile tells me you’ve heard that many times before.” 

“Yes, most of my doctors have never seen a CLOVES patient,” I replied. I then prepared to answer the question that I assumed she would ask. It’s the question most people ask, the question I never really know how to answer: How does that make you feel?

Every time I arrive at the emergency room with a cellulitis infection, I walk in with tachycardia. Sure, my physical pain may play a part in my abnormal heart rate, but I cannot deny that fear is also a factor. When I have a recurrent cellulitis infection, my symptoms do not conform to the marks of a “typical” cellulitis patient. I rarely have a noticeable break in my skin, and the affected area is usually a different shade of red than what a doctor expects. Every time I arrive at the emergency room, I am terrified that the doctors won’t believe I have cellulitis because they haven’t seen it in a CLOVES patient before. So how does that make me feel? Frightened. Knowing that a doctor may dismiss me or my symptoms is frightening.

Every time I meet a new doctor, I walk in with the expectation that I am going to have to justify either my symptoms or how my doctors are managing my symptoms. This happened a couple of years ago when I met a snarky pulmonologist. As he looked over my medication list, he rudely questioned why I take blood thinner shots. “I have a history of pulmonary embolisms,” I replied. He then asserted that I should be taking an oral blood thinner medication. “We tried that,” I responded. “I had increased issues with clotting.” His obstinate facial expression clearly expressed that he didn’t believe me. Following an abrupt scoff, he remarked that I wasn’t even taking the right dosage of blood thinner. Considering my hematologist had just checked my blood thinner level, I again rebutted, “If you look at my lab work, you’ll see that my labs confirm I’m taking the right amount.” He raised his eyebrows in disbelief before stating that he had nothing to offer me. My supposed symptoms and complications were someone else’s problem. This hectoring interaction is just one story I’ve pulled out of the immense book I could write on forms of medical gaslighting. Again and again I have witnessed doctors question my symptoms or treatments as they either invalidate my experiences or fail to understand my syndrome. So how does that make me feel? Exhausted. Defending myself again and again is simply exhausting.

Every time I sit in a doctor’s office with a new health complication, I walk in prepared to hear, “I don’t know.” Even when we do know why I’m enduring certain symptoms, we rarely know how to “fix it.” My childhood hematologist used to often look me in the eyes and gently whisper, “I have no magic.” There is no quick fix. There is no easy solution. There is no cure. It often seems that there is more we don’t know than what we do know. The best we can do is attempt to “manage” the symptoms. Our treatment method is typically “trial and error” until we know which therapies are effective and the longevity of such treatments. So how does that make me feel? Burdened. Living in the midst of blatant uncertainty is a burden we must carry. Sure, it’s my burden; however, it is also felt by those around me. My life with CLOVES syndrome is a communal burden, a weight that many of us shoulder as we journey together through the unknown.

When my new doctor confessed that she had never heard of CLOVES syndrome before, I didn’t grin in an attempt to remain stoic. I wasn’t smirking to make her feel incompetent or inept. Rather, I genuinely smiled because of the beauty of that moment. I knew that her newfound awareness of CLOVES syndrome would lead to even greater patient care. And that’s what CLOVES Syndrome Awareness Day is all about. It aims to educate those outside of our little community about the barriers we face. It highlights the lack of funds, research, and treatment options for patients such as myself. And perhaps most importantly, it calls each of us to action. It prompts us to ask, “How can I help? What can I do?” On CLOVES Syndrome Awareness Day, how do I feel? Hopeful. As greater awareness leads to increased action, I am hopeful that where we are headed is better than where we have been.

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