The Need to Belong
Whenever I meet anyone with Lupus, I always want to hear about the symptoms they
've experienced. Have you had joint pain? Swelling? Have you ever had a rash or have you ever lost your hair? Do you have organ involvement? And you know what? They're just as curious to know what symptoms I've had. When it comes to our disease, I guess we want reassurance that we're not alone in our suffering. Not because we want someone to commiserate with. Rather, we want to know that we're not crazy for feeling the way we do, physically or emotionally. We want to believe that the disease isn't picking on us and we want some sign that, because someone else has made it out alive, we can, too. It gives us hope to know that no matter how bad today might be, tomorrow could be better.
I remember arriving at my rheumatologist's office for an appointment one day to find a young woman, probably in her early 30's, with her adorable, little daughter sitting in the waiting room. The woman was attractive, in good shape and had no signs of ill health at all: no apparent hair loss, skin rashes, joint pain or swelling. Not only did she stand out because the majority of Dr. R's patients are pushing 70, but she also caught my eye because, unlike me at that time, she looked like she was full of energy, happy and healthy. The question that immediately came to my mind - I wonder if she has Lupus? I found myself hoping beyond hope that she did. I wanted to know that I had the potential to have what I thought she had - a life without illness. It would be a life where I could move and walk like I used to, one where I didn't worry about my hair falling out, angioedema, or chest pain. It would be a life where I was healthy enough to have children and strong enough to take care of them. I wanted to believe that I would live long enough to bring my daughter or son to a future doctor's appointment. At that time, I was so far from experiencing any of that that it felt like I'd never get there. Ever.
've experienced. Have you had joint pain? Swelling? Have you ever had a rash or have you ever lost your hair? Do you have organ involvement? And you know what? They're just as curious to know what symptoms I've had. When it comes to our disease, I guess we want reassurance that we're not alone in our suffering. Not because we want someone to commiserate with. Rather, we want to know that we're not crazy for feeling the way we do, physically or emotionally. We want to believe that the disease isn't picking on us and we want some sign that, because someone else has made it out alive, we can, too. It gives us hope to know that no matter how bad today might be, tomorrow could be better.I remember arriving at my rheumatologist's office for an appointment one day to find a young woman, probably in her early 30's, with her adorable, little daughter sitting in the waiting room. The woman was attractive, in good shape and had no signs of ill health at all: no apparent hair loss, skin rashes, joint pain or swelling. Not only did she stand out because the majority of Dr. R's patients are pushing 70, but she also caught my eye because, unlike me at that time, she looked like she was full of energy, happy and healthy. The question that immediately came to my mind - I wonder if she has Lupus? I found myself hoping beyond hope that she did. I wanted to know that I had the potential to have what I thought she had - a life without illness. It would be a life where I could move and walk like I used to, one where I didn't worry about my hair falling out, angioedema, or chest pain. It would be a life where I was healthy enough to have children and strong enough to take care of them. I wanted to believe that I would live long enough to bring my daughter or son to a future doctor's appointment. At that time, I was so far from experiencing any of that that it felt like I'd never get there. Ever.
I didn't speak to the woman directly, but during my appointment, I asked Dr. R about her. Unfortunately, he said that while he couldn't discuss another patient's medical history, he could tell me that the odds another patient I just happened to see in the waiting room had Lupus were very slim, given the limited number of people that have the disease in the first place. Ugh. Not the answer I wanted. But you know what? Thinking the way I did made me realize just how desperate I was to be healthy again. It was one of the first times I actually admitted to myself that life with Lupus wasn't so great. During that fleeting moment of self-reflection, I decided that maybe, sometime in the near future, I would make a change for the better. And slowly but surely, that change came about. And here I am today...
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