The most challenging part of my illness is not the hair loss, skin ulcers, or constant nausea. I’m starting to come to terms with the swollen joints and the forced sabbatical from lifting, hiking and cardio. I’m okay with the fact that I’ll be on heavy-duty medication for at least ten more months and, quite possibly, the rest of my life. I understand that long-term medication bars me from pregnancy, and that my choice around having children may very well be off the table. As frustrating as it is, I’ve accepted that my doctors can’t predict the trajectory of this disease any better than I can.
And yet, as simple as it sounds, the most difficult aspect of this disease is the sense of isolation. Each year, approximately 118 people globally are diagnosed with disseminated valley fever. Of those, about 12 are young, previously healthy individuals with no other risk factors. We’re the 0.0000000016%. We are the anomalies.
And yet, I can’t find “we.” Try as I might, it’s just me.
There do not seem to be any resources, communities, or other people working through the same things that I am. There are no forums talking about remedies, research, and cautions. The most recent community events took place seven years ago, and nobody has even written a book that I can read through and relate to. Maybe the reason I feel so compelled to write about my experience is to help the others find me, so we can all feel a little less alone.
Though nearly all of my friends seem to have disappeared, my boyfriend, parents, and doctors have been extremely supportive and empathetic, and I don’t take that for granted. Yet, I don’t think they’ll ever fully understand how confusing the migratory symptoms are, how much shame I still carry from those three years being labeled a hypochondriac, nor how embarrassing it is to explain to inquisitive children at the grocery store that the open lesions on my arms are not contagious as their parents tug them away.
I have cried so much over these last several months. As much as my body hurts, the heartache is so much worse.
Valley fever is considered an “orphan disease” because there are so few annual cases. With extra-pulmonary spread occurring in only 1-2% of those case, my disease is that poor kid that ages out of the adoption system because no one wanted to take him home. Lately, I’ve been feeling like that kid waiting to find their forever home. I want a friend who I can commiserate with or someone with whom I can exchange suggestions and rants. I want to meet someone who can see through my bullshit when I say, “I’m okay.” Because, try as I might, I can’t make sense of what’s happening in my body, nor find any relief from it.
My boyfriend contracted something equally rare and infinitely more serious over a decade ago, and it cost him everything. He’s adjusted, grown, and discovered new ways to thrive within his new realm of normalcy. In the time since, I don’t think he’s attended a single support group or even met another person who shares his experience. He doesn’t need the affirmation that he’s not alone. He’s not thinking about his diagnoses, but instead how to make progress every. damn. day.
I feel weak, insensitive, and needy for asking for more–for needing more. He did it all on his own, but I’m slowly working to accept that I am my own person, and I need to draft up my own personalized recovery plan.
I’m currently stuck someplace in between. While I’m intent on continuing to make progress in my life, perhaps just with slightly different objectives than I held a year ago, I so desperately long for a companion–someone who understand how it feels to have their image of “perfect health” shattered, another who is walking uphill both ways in the snow day after day, or even simply the inspiring story of someone who has found strength–someone who has made it through the storm.
A friend of my mom’s has a young son who contracted a severe case of valley fever that spread to his bones at age thirteen; four years later, he’s still working to manage the nasty infection. I suppose I’m seeking people like this young boy who I’ve yet to meet–those who have battled the disease that baffles even the most experienced doctors.
I can’t help feeling alone, and I can’t help wondering if the others feel alone too. I wish I could just collect everyone one in a room and announce, “this sucks, amiright?” and then partake in a group hug. I would give absolutely anything to experience that moment.
However, I’m slowly coming to realize that I can practice being my own companion, adviser, and protector. I understand what I’m going through better than anyone else, so perhaps the solitude is, in actuality, a gift. This turbulent period is a reminder that, in my time of need, I can rely on myself.
I love myself, I care about me, and I’m committed to advocating for and ensuring my own well-being. Regardless of whether or not I meet someone who shares my diagnosis and can relate to my experience, these facts will not change. In those dark periods when I do succumb to loneliness, I will know that my higher self will be reaching into the darkness to remind me that I am never actually alone.