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Why I Told My Family About My Lupus Diagnosis

Photo Credit: Tom Wang/Shutterstock

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Inherited intergenerational trauma is very much real. It’s often mentioned in the context of cultural identity, but the truth is, it presents itself in more universal ways, too. Like with medical illness, for example.

Although we’re thankfully centuries away from the age of leprosy, and HIV/AIDS is more understood now, there’s still a visceral fear of being around those with personal maladies - a distinct stigma about chronic illness and disease. It’s often even worse when it’s an affliction that people don’t know much about or an invisible illness whose existence cannot be proven but makes the sufferer look like a potential wolf of contagion in sheep’s clothing.

Both are often the case with autoimmune diseases, particularly with systemic lupus erythematosus (SLE), which is wild, unpredictable, and incurable.

In its most basic definition, lupus is an inflammatory disease that can lay dormant for any amount of time - sometimes even a lifetime, if you’re lucky - before suddenly rearing its head to rage an impotent war on your body. What it does is it causes your immune system to randomly attack parts of yourself, mistaking the identity of perfectly normal tissues and organs for enemy ones, like a deranged sleeper cell. And from this, no body part is safe, which is why it’s also been called The Great Imitator. A lupus flare can affect any number of bodily systems, and reactions run the gamut, making it hard to attribute or diagnose a singular attack to lupus. And because of how diverse its manifestations can be, it’s made a cure impossible to nail down.

SLE is most easily identified by a signature “butterfly rash,” where redness spreads across your cheekbones and the bridge of your nose. But just because it’s the most common and obvious giveaway doesn’t mean it’s universal. It’s also known to affect any part of your skin anywhere, inside or out, and rashes can look like anything from prickly heat speckles to raised blisters. Mouth or nose sores, particularly those slow to heal, are also associated with the disease.

It’s complicated, hard to explain, difficult to understand, and scary. There’s so much that can go wrong, but no clear path as to how or if it will become a worst-case scenario.


Cosmetically, in addition to rashes, this type of lupus can cause your hair to fall out and the head under it to ache or flush with fever.

Lupus is also well known to affect your joints, causing pain and stiffness that can worsen over time and incidence or fade away when it’s good and ready - a major reason why many lupus patients can go undiagnosed or dismissed as hypochondria. The extreme fatigue that can accompany a flare is another symptom that gets dismissed for that same fleeting nature, or on the opposite end of the spectrum, its ability to linger. This can be falsely attributed to mental illness, including depression and confusion, which can actually be products of inflammation of the central nervous system.

Then there’s the invisible stuff, like if it inflames the tissues surrounding the heart and lungs or the organs themselves. Finally, life-threatening ways lupus can manifest is to create blood disorders, including anemia and clogging of the arteries, destroying your kidneys when it progresses to lupus nephritis.

So as you may have gathered, it’s a tough diagnosis to receive.

It’s complicated, hard to explain, difficult to understand, and scary. There’s so much that can go wrong, but no clear path as to how or if it will become a worst-case scenario. And it’s exhausting enough to try to commit your own frantic research to memory and spin yourself out of panic without having to do the same for someone else. It’s much easier to just keep this diagnosis to yourself. To avoid worrying the ones you care about, to avoid questions, and...to avoid the truth of it.

I hemmed and hawed about it for that reason.

I didn’t have active, noticeable symptoms upon confirmation. So why answer a question no one except me had about what was wrong with me? There was no cure, no treatment plan, no solution. So what was the point of including my family in my blind navigation of this diagnosis? My mom lived with well-controlled but a surplus of anxiety, which made her immensely knowledgeable about a variety of illnesses. But was I ready for an overwhelming onslaught of research, remedies, and medicinal information from around the world? And then there was the guilt I knew she’d feel, the loving mother’s guilt of passing on a defective gene since autoimmune diseases are documented on her side of the family. Would it be selfish, then, to share my burden?

Then there was my own personal pride. My body was failing me. It was weak. I was weak. Vulnerable. Defective. Maybe even broken. I might need help one day and understanding along the way. And that was perhaps the hardest pill to swallow.

Why answer a question no one except me had about what was wrong with me? There was no cure, no treatment plan, no solution. So what was the point of including my family in my blind navigation of this diagnosis?

 

Ultimately, though, I chose to tell my family simply because I realized it would be irresponsible not to.

Although SLE typically affects only one in four siblings, which was my family exactly, it was my duty to break through the wall of family medical secrecy to warn them of a potential dormant predator. What if one of them also had symptoms they quietly suffered in shame? Alternatively, what if my sisters or my brother were also told it was a false positive test because certain symptoms didn’t manifest?

It was too big of a risk to take. So I told them all. I called my mother first, who was heartbroken as predicted. She threw herself into learning about the disease and how to be supportive during future flares. She then took on the difficult task of trying to explain it to my father, whose old-fashioned sensibilities typically have a harder edge.

I called my sisters, one at a time, to tell them in somber tones. One works in healthcare; she grieved, understanding the seriousness of the diagnosis, and told me about clients who staved off worse cases and are living full, happy lives with minimal flares. My other sister quietly listened. She thanked me for the warning and pointed out the positives--that I wasn’t in an active flare. I could learn to mitigate my risk of angering the wolf, and I was already on a path of reclaiming my health and holding onto my mobility through fitness.

I’m still not sure if my little brother knows much about lupus, to be honest. But his reaction, of vague sympathy that demanded no details, and unchanged treatment of me, was just as helpful as all of the others.

In the years since then, my lupus has come up only a handful of times. My family has left it to me to volunteer status updates, respecting my privacy despite my making the diagnosis public in the family forum. They give me consideration, but not excuses. They provide support, even if it just means never treating me as less-than.

Most importantly, they remain vigilant of autoimmune diseases, knowing that it runs in our immediate family. In today’s unpredictable world, if a warning is all many of us can get, I feel that letting them know of my own invisible illness helps to make sure any other ghoulies are more easily seen. And if that’s the most I’ve done with my diagnosis...well, I still consider that a contribution worth making.


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