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The last couple of years have been littered with a variety of ailments and diagnoses. My anxiety, depression, shingles, neuropathy, PCOS, celiac disease, and glaucoma have been common topics on this blog. For the most part, I am an open person about my health journey.
What I haven’t been able to talk about, however, is my latest diagnosis. The latest diagnosis is the one that is incomplete, the one that finally has me convinced that maybe I can’t “fake well” anymore.
This summer, after finally being rid of my shingles-related neuropathy, I began to develop excruciating joint pain. My thumbs would swell and turn purple without any movement to trigger these symptoms, and the joints in my feet and ankles were so swollen that I had to buy larger shoes. Just to get out of bed in the morning, I often had to apply a heating pad to my stiff knees for nearly two hours, and no amount of NSAIDS or prescription medications seemed to help. The bilateral joint pain, constant swelling and stiffness, and uncontrollable fatigue had me convinced that I was about to get the same rheumatoid arthritis and gout diagnoses that my grandfather got an early age. Scared and desperate for an answer, I made an appointment with my primary care doctor. 
My primary care doctor took note of everything I had written down in my 3 pages of single-sided notes and my photos, and he agreed to run the necessary tests for autoimmune conditions. Five vials of blood later, I was told that I would hopefully have my diagnosis in a week. I should have remembered that nothing medical ever comes easy for me.
To my surprise, all of my blood-work was negative or borderline, and they told me that we could run the tests again next year. I was furious. I knew that my symptoms were not just in my head, and it did not help that the guy that I was dating at the time met my frustrations with a very tactful, “I don’t get why you’re mad that you don’t have something seriously wrong with you. Be grateful.”
Without a diagnosis, I only had symptoms that were considered to be in my head. I angrily made a doctor’s appointment and explained that even though my bloodwork was negative, my pain and my symptoms were not. After a lot of convincing from an assertive side of me that I did not know existed, y doctor wrote me a rheumatologist referral. 
My rheumatologist was thorough and kind, but even she could not find a definitive answer for my symptoms. Although I have genetic markers for many autoimmune conditions, only my inflammation and Vitamin D bloodwork appeared worrisome. My hand x-rays appeared mostly normal as well. With meloxicam and prednisone prescriptions, and a diagnosis of viral arthritis that should hopefully go away in 12 months, I was sent on my way to navigate the world as someone who is chronically ill without a label to justify the symptoms. 
Because my diagnosis is unclear, but my symptoms and pain are real, I feel a constant need to “fake well.” Well-meaning friends have told me that it’s great that “I’m not that sick after all,” and in my desire to avoid looking like I am faking sick (especially to friends and students that I consider to “have it worse”), I often find myself faking well.
Faking well means that I use a lot of energy that I honestly do not have to keep up appearances and to make people happy. For me, faking well means that I get to work earlier than usual so that I can walk slowly from the parking garage and reduce my pain levels. After all, without a formal diagnosis, I have no qualifiers for temporary parking. Faking well means that I say, “I’m fine,” as I discreetly hold a hot water bottle over my aching knees in a staff meeting. Faking well means that I use my lunch hour to take naps on a yoga mat underneath my desk. It means trying not to limp, passing off my dizziness and vertigo as general clumsiness, and making jokes about my small kidneys when, in reality, I’m rushing to the bathroom because I cannot keep food down with these medications. Faking well means that I am still icing and heating my joints when no one is around, turning down social invites that I am too sick to attend under the premise that I have to work, making jokes about my meal prep being a bag of gluten-free chicken nuggets (because honestly, I am in too much pain to make anything else), and pretending that I am okay with taking stairs in buildings that do not have elevators. My blood pressure is also through the roof because of my medications, but I fear telling my doctor and being taken off the one form of pain relief that I (kind of) have. 

I hear all the time that I seem like I am getting better, and while I am making some glacial progress, I am honestly just faking well. The energy that it is taking to fake well and to keep up appearances is the very thing that I need if I have any hope at being well. 
I learned this lesson the hard way just last month. Earlier this year, when my health seemed to be having a positive up-swing, I booked a solo-trip to Europe. I spent months planning this trip, and I watched much of my hard-earned vacation money go to medical bills instead. The week before the trip, I was worried that I would be unable to go at all and probably would have cancelled the trip if my flight had been refundable. 
Somehow, I managed to push through and even made myself believe my attempts at faking well. With a lot of begging for elevators and subway seats, I held out to the 9+ miles a day of walking. When I did not think I could walk anymore, or I missed train connections because of my slow walking, I took one of the pain pills that I had so carefully rationed during shingles and somehow pressed on. There were many nights that I went to bed crying, and some days, I could not sleep at all for my painsomnia, but I did it. I faked well for ten days in Europe and had never been prouder of myself. I genuinely convinced myself that I had almost completely walked my stiff joints away.
Then I landed in the States and tried to walk to customs without moving sidewalks. I started crying so hard from the pain that random strangers brought me boxes of tissues. It was in this moment that I realized for the first time just how much of a toll that faking well can have. 
The last few weeks, I have not made the same efforts to fake well. I have been pairing my dress pants with leather tennis shoes, I asked for a temporary departmental parking permit, and I have unapologetically said, “I am not myself today. Please give me the space that I need to be well.” It is hard, because I can see the confusion on people’s faces and a quick wondering of whether I’m faking sick when I limp at work on a Monday but put on heels for my Instagram photo (and only for the photo) of girls night out on Friday. Although I may not have a definitive diagnosis, my chronic pain and my symptoms are no less real, so please understand that I can no longer “fake well” all the time just to put you at ease.