Ok here goes…

I’ve never taken the time (or had the desire) to talk about this in detail nor in full. It’s always felt self-indulgent and attention-seeking. 2 things I abhor. I’ve typed out “statuses” before and then immediately deleted before hitting post. They’ve felt “cringy” in the moment, like it may appear I’m seeking sympathy or attention – neither of which is true. Now, don’t get me wrong, I like attention. Anyone who knows me would balk if I insinuated I don’t. I like positive recognition, I like being in the spotlight on stage, I’m an achiever and I’m proud of my accomplishments. Never having suffered from stage fright, I’ve always been the leader in a class presentation or the volunteer when an event needs a public face. These are very specific circumstances in which I present myself through a positive and capable lens. I pride myself on being the reliable one, the problem solver, the one who can put others at ease and make them laugh or feel comfortable. The “hey, don’t worry, I got this” person.

So, what happens when behind the scenes, for YEARS, there’s something else going on entirely? Something that weakens me. Disables me. Pushes me down and holds me there. Something that takes away my sense of being the capable, reliable one. The ones that know only know because I couldn’t hide it. Coworkers that notice “wow, you’ve been sick a lot lately.” Immediate family members that hear “the tests came back and of course, they don’t know.” My husband who takes care of me when I can’t get out of bed or puts up with the mood snaps. (I say snaps because a swing implies some kind of warning motion before releasing.)  Close friends who I feel safe enough to include in this bizarre and frustrating cycle of highs and lows.  To answer this question of ‘What happens?’ is to acknowledge the awkward conversations when trying to explain to coworkers why I’m going to so many different doctors’ appointments, and then seeing the inevitable flash of disbelief cross their faces that once showed compassion and concern. Explaining away to colleagues the new strange brain fog and forgetfulness I’m exhibiting, that I can’t even comprehend myself. Asking my therapist why I suddenly have adult ADHD tendencies, or asking my doctor if the hand tremors are something that will eventually go away. Hope that I’ll outgrow the new food allergies that have dramatically flipped my life upside down, and try to stay calm when I hear phrases like “brain tumor,” “hypothalamus shut-down,” or “Crohn’s” that eventually get added to the pile of countless false possible explanations.

And then, while all this whirs and wizzes in the background, I put up an elaborate smoke screen of “I’m good” to the rest of the world. Feeling like I drift back and forth through the smoke and never really gain a clear view of what the hell is going on. Living with a strange envy of those that at least have a name to put to theirs, because at least they have proof they aren’t just some kind of hypochondriac or just “lazy and unmotivated.” And then guilt for feeling such a dark type of envy. Having many earmarks of things like Hashimotos, Celiac, Crohn’s, Ehler-Danlos, Chronic Fatigue, but never testing definitively. Keeping a photo album on my phone full of documentation of unexplained hives, rashes, swelling so I can prove (to a degree) it’s not all in my head. But what can’t be documented is the anxiety and depression that swims around me like a shark, popping up in the most inappropriate moments. Sudden heart racing and face numbness as an unprovoked panic attack creeps in (which I’ve learned to navigate with invisible poise), the complete lack of motivation or energy to do things I actually enjoy, and the relief when plans get canceled so I can just wrap up on the couch and watch tv for the afternoon.  

Years.

I’ve had anxiety disorder since I was in elementary school. She’s become a comfortable frienemy that I’ve lived with. I know when she’s coming, or even if she shows up on my doorstep unexpectedly I know how to get comfortable with her until she calls an Uber and vacates the premises. We have an understanding. We can drink tea and visit together, because I understand where she comes from and know how to pick up after her when she’s gone.  But the rest of this is like a troll living under the floorboards that is vague, and dark, and elusive, and speaks a completely different language. But demands attention and forces conversation in awkward and embarrassing ways. Throws messy and noisy house parties that cause a ruckus and disturb the neighbors. But then, disappears seamlessly and without a trace when authorities are invited in to identify its origin and species. Leaving me looking like an attention-seeking, unstable, messy house owner who can’t be trusted or believed.

All of this is me. The other side of me, and my life. After hiding this part of me for almost 2 decades, I’m ready to acknowledge it, internally and out loud: I have a chronic illness. Currently, (and the level of frustration and anger when I type this next part elevates my heart rate) much of it is still undiagnosed, and therefor I’m constantly undergoing tests. Mystery chronic illness. What I do know for certain is that it is related to diagnosed thyroid disease and active Epstein Barr Virus cycles.

What exactly does this mean? It means that since my mid-late 20s I’ve had a series of unexplained symptoms, repetitive Mono, bizarre test results that only lead to more questions, a small database of specialists that I believe are doing their best, and a referral to Mayo Clinic that I haven’t followed up on because I just can’t bear hearing “this is unusual but we just don’t know” from them, too. It’s exhausting. I’m exhausted. My body is tired. My mind is tired.

I want everyone to know that I am still the capable, reliable, problem-solving, funny friend…

Part of me is scared to fully embrace and accept the reality of “I have a chronic illness” – a large part of me.  Part of me feels the false belief that to accept it is to give it power to fully take me over. I’ve lived under the misconception that by denying it’s existence, I can maintain some sort of power and control. I no longer believe that to be true. I fear that it could be true, but I believe that it is not. I believe that by accepting this, even if I don’t have a label for it in completion, I can fully step into this reality, and become empowered to take much better care of my wellbeing. Remove the smoke screen that drains my energy to maintain. I think I’m ready to welcome the troll up from the basement, and invite it to tea. I befriended my anxiety a long time ago. I need to do the same with this. I have to believe that if I bring it fully into the light, stop denying its existence, I will see it isn’t as scary as I’ve feared. I must believe that I won’t be labeled or judged by friends, coworkers, family, like I fear I will be. I want everyone to know that I am still the capable, reliable, problem-solving, funny friend. I am afraid to lose that. Like if you know this troll lives in my basement, I will lose my standing with you. I won’t be seen as strong and confident. And maybe that’s true. Maybe you will see me differently. But I am deciding right now that I can no longer be concerned with that. I cannot put my energy into keeping up the smoke screen to literally keep up appearances.  I have to believe that I can exist in both spaces, fully and powerfully. I can accept that I have a chronic illness that knocks me down and confuses all my doctors, and STILL be the person I also am: fun, reliable, creative, confident, and capable. I have to believe that I can be all of these things at the same time.

The thing is: I am already all of these things. I have been all of these things at the same time. For years. But I am now giving myself permission to fully accept that I am these things, and still embrace and love myself for it. Chronic illness is not a failure. It is my reality, not my failure – even when it feels like that sometimes. As I stare down more tests and appointments coming up this Spring, I will stop pretending it doesn’t exist and I will stop trying to prove my worth in spite of it.  It is here and real, even if it’s mysterious and complicated. I am also mysterious and complicated, but very much real. And very much here.