Written on Wednesday, July 20th. Published on Thursday, July 21st.
The truth is, I'm not exactly one to write during the hard moments. I willingly write about them afterward, when I feel like I have learned some sort of grand lesson or at least snapped myself out of whatever uncertainty I am in. But some days are hard. Some days have no clear moral to them. Instead, illness seems evil and random, with the cruel capacity to suck all of the life out of me and strip me of the identity I have spent 17 years creating. Honestly, today was one of those days.
I woke up in more joint pain than I went to bed in, which is always discouraging. I started the day with an appointment with my oral surgeon, which was disappointing to say the least. When I revealed the jaw pain and issues I was having in conjunction with the flare in my lower joints, she immediately directed me to eat soft foods for two weeks and return for a follow-up. My heart sunk. Doesn't she know that the soft food diet was making me crazy? I thought incredulously. Isn't she aware of the inseverable link between my mental health and my ability to chew? I did not argue with her, since she is a brilliant surgeon and I am simply a complex and emotionally-drained patient, but I was quietly devastated. I spent all day joking about it and eating semi-soft foods, but I felt a sense of panic that only comes when you know firsthand how awful a soft-food diet truly is (especially for a vegan like me - think no pudding, scrambled eggs, mashed potatoes, etc.). It felt like such a dumb reason to be upset; there are people starving, and I am bitter about the type of food that I have to eat? But this brief emotional hurdle has been impossible to address given the present condition of my joints.
Between my joint pain and soft food diet, I was not feeling particularly grateful for all that the day had to offer. Even texting felt like a monumental task to aching bones. What's worse is that the pain was causing me extreme fatigue, enough to make me fall asleep after completing unimpressive, menial tasks. I napped periodically throughout the day, because why not? I didn't eat breakfast or lunch, because what did it matter? Why not just stay under the three layers of blankets I inhabit every night? Why not just sleep through the pain and hunger and disappointment? What difference does it make if I am awake or asleep? Why should I put in effort to look nice or go exploring when my health is going to halt any and all of my attempts? Why should I do anything if it is just going to force me right back into bed?
I slept a lot, but eventually I needed to move on with my life, and having a friend over seemed like a good start to that. Before she came, a person I am very close with commented, "I'm sure [your friend] is pretty sick of coming over when you're not feeling well." There was no malicious intent, but the words stung like lidocaine (medical jokes, I know). Of course she's sick of it, I thought, holding back tears. I'm sick of it. I want to stop hanging out with me. Why did I tell her it was okay to come over? What am I putting her through? I felt selfish and I responded by mentally torturing myself with painful questions designed as a ethical form of self-incrimination. Was I having her over to distract me from my own pain, or because I thought she would genuinely have a good time? Am I receiving significantly more than I am giving in my relationships? Isn't this massive inequality morally wrong? It seems that way. Having a friend over ended up being nice and gave me something to do besides sleeping face-down on my pillow or staring through wispy white curtains praying for any sort of avian entertainment, but when we stopped talking for a period of about 30 seconds I fell right asleep, exhausted by my attempts to calm my racing mind and soothe my uncooperative, flaring joints. And as embarrassing as it is to admit since I have spoken many times before as an adamant defendant of grace, friendship, and compassion, the truth is that even though I shouldn't, I still feel absolutely horrible about falling asleep. I want to be a good friend to people. I want to accurately convey how much I care about them. It seems like my body just can't keep up with me, and I want out of it. Who wants to come over if all their friend is going to do is sleep? Staying alert is the most basic of functions, the most simple way to show someone that you care. If I can't even stay awake, what kind of friend does that make me?
All in all, it was not a terrible day. I saw two cats (we're really delving into the important stuff here), one of which snuggled with me on the sidewalk in the middle of a college campus for a solid five minutes before I noticed a group of students in a lecture hall staring at me through the large, modern window that spanned across the entire wall. At first I assumed they were staring at the bandages tightly wound around my knees and right ankle, playing a guessing game of what injury I had and judging its legitimacy, but then I realized that I was on the ground with a cat. Such is life. This evening, I happened upon a wonderful veteran and his service dog, both of whom were injured in Iraq, and was reminded of how difficult life can be but also how beautiful unconditional love is as I admired the bond between them and asked questions in hopes of soaking in some of the veteran's insight. Finally, I met up with a former teacher, sent a low dose of caffeine coursing through my veins in the form of tea, talked about my life outside of all of this, and felt more like myself again.
Days like these are hard. Of course, I am not oblivious to all of the amazing things that happen in the world every day. I remain a cheerleader for empathy and grateful for friends who care. I laugh at jokes and crack some of my own in a last-ditch effort to convince myself that everything is funny instead of sad. I feel joy and I give hugs and I tell people that I love them. Yet I cannot help but feel crushed by the weight of not knowing how to be good at being sick. I have had a lot of practice - why do I still have so many questions? Why am I still screwing it up so much? Shouldn't there be some sort of manual for this? All I got when I was diagnosed was a brochure. Shouldn't someone explain to me how to make my friends understand the implications of a chronic illness? Will they ever understand? I spend hours wondering how I am ever supposed to repay all of the debt I accumulate with my friends when I am too exhausted to remain awake and alert for any sort of interaction.
Perhaps the hardest part of it all is feeling different. Most people do not have to worry about how their friend is going to feel when they are hanging out together; my friends do. Most people do not have to worry that spending time with their friend will be more exhausting than it is rewarding; my friends do. Most people do not have to make plans around their friend's ability to walk; my friends do. Of course, it is thoughtful and considerate of my friends to take these gentle steps instead of just being like, "We're climbing Everest today, let's go." But honestly? Ninety-nine percent of the time, I don't feel like my company is worth it. I have no incredible talent, I often say the wrong thing, and I over-apologize whenever I make mistakes to the point where people become understandably fed up with me, which, of course, only makes me want to apologize more. Yet I always abide by my pretty legitimate conclusion that over-apologizing is generally better than under-apologizing.
Somehow, I tell myself, with a growing sense of determination, I must cleanse myself of the guilt that comes with carrying around a sickness that my loved ones are emotionally subjected to and influenced by every time I flare. Even with a disease as noncontagious, invisible, and internal as arthritis, it is difficult not to feel unclean. No one seems to understand this phenomenon, yet we are surrounded by a world that often dismisses or disregards people with chronic pain and/or disabilities, and it is terrifying. How am I supposed to feel confident in my friendships when so many previous ones have succumbed to the deceptive forces of illness? How am I supposed to put on a brave face when I'm terrified of everything that has happened to me healthwise over the years? How am I supposed to cling onto the people I need the most for support when they need space to breathe, too? How am I supposed to know who to talk to about these moments of despair and when? How am I supposed to know if people actually like me or if they are just hanging out with the sick kid? I hate myself for asking these questions, but I cannot stop myself from pondering their complexities. If you ever have any answers or advice, do share.
As you have probably figured out by now, I run an entire blog centered around living with rheumatoid arthritis. I volunteer with the Arthritis Foundation, network with other people living with autoimmune conditions, and advocate for patients. How can it be that I still have absolutely no idea what to do with my own life? I am unable to figure it all out. Some of my beliefs conflict, and some of them are underdeveloped. Living with arthritis is a jigsaw that I have been working tirelessly at for five years, yet the pieces are all jammed together, and there is no natural smoothness or skill involved. Nothing feels like it clicked right in where it was supposed to be. I am just mashing ideas where I think they might fit, hoping that along the way I will find empathy, love, and understanding but simultaneously being painfully aware that no one else can see the rest of the puzzle and that my disease will continue to be a cause of isolation.
I do not feel hopeless by any means. I am so hopeful that I have to periodically inject myself with doses of reality. But I do not have any lovely anecdotes to share, or meaningful morals. Today was pretty rough. I looked rough, I felt rough, the world seemed kind of rough. I wish I could say that the way arthritis has changed me as a person has been worth all of the suffering, but the pain and panic have been so intense that if I could magically wave a wand and make my body healthy again I would do it in a heartbeat. I think that would make all of my friendships and conversations easier, too. Alas, this is not how the world operates. Some days are hard.