(I wrote this haphazardly and on different days, so my apologies for any nonsensicalness. I just wanted to get something out.)
I was in the ER last Thursday at Vanderbilt at the suggestion of a nurse, and that led to another appointment at Vanderbilt this week.
I’ve been wanting to write lately, to write about all the frustrations with my chronic illness, and how I hate the phrasing ‘chronic illness,’ as it sounds like some amorphous, ambiguous, possibly fictitious, imagined thing. I call it chronic illness or autoimmune disease because it’s a great many things, and there are a great many things it is not.
I’ve seen a multitude of doctors over the past couple of years, and I gave up on trying to fix myself about six months ago, or I decided I was feeling “good enough” to just deal with it. But then things became worse again.
The average time it takes to be diagnosed with an autoimmune disease is 4.5 years. And usually with one autoimmune disease, you likely have more coming your way (yay). You spend years going from doctor to doctor, having countless vials of blood extracted from your body with a smattering of tests performed on the viscous burgundy samples. Throw in a gallons worth of urine samples, and some biopsies, mammograms (why not), MRIs and a boat load of other tests. Sometimes nothing shows, sometimes confusing results form, and nobody really knows what to tell you, but it seems like doctors often want to tell you something, so they might say it’s this or that, and move on.
Yesterday at my appointment, after talking with the doctor and nurse for a long while, after they looked at my body and looked at my records, the doctor sat down and looked straight at me and said, “I’m going to be honest, you’re a mystery to me. There’s definitely something very wrong with you, but I don’t know what all it is.”
I was actually elated to hear this. I needed honesty, and I needed to feel seen.
As I alluded to, doctors have never really figured out what’s wrong with me, but they knew that something was wrong and prescribed various treatments, medications, supplements, lifestyle changes, etc. (I’ve been on a treatment that I inject in my stomach or legs every other week.) Doctors might recommend me to some other specialist or tell me: it’s all just something you’ll have to live with for the rest of your life. Which is never what you want to hear when you’re struggling to make it through each hour, and you aren’t really sure if you want to make it to the next. (dramatic, much?) Or, as I said, they might claim it is some specific thing just so there was a definitive name to call it and declare this treatment or that treatment will cure all. (Let me note that I know doctors mean well, and I know they are often not provided enough time to sit down with a patient to determine the root causes of illness).
But people love to put things in neat little boxes, it’s comforting and makes you feel like you have control. If there is no specific name to call it, no real way to categorize and qualify it, no objective answer to the question, then it is almost as though it doesn’t exist. It’s easier that way. But it can make someone with a chronic, undiagnosed illness feel like they don’t exist.
If you have cancer, a broken leg or a heart attack, people know what box to put you in. With chronic illness, you’re sort of left floating around in space, boxless. It makes sense and that was totally profound, I promise :)
[I always feel the need to note that I completely acknowledge there are enormous amounts of people who suffer from far, far, far worse health conditions than I. And I do not intend to belittle, compare or inflate the validity or importance of one health issue over another.]
As someone who comes from a family that is not-so-great at admitting they are not feeling well or are sick, or that they need to slow down, I have always had a difficult time believing anyone (including myself) when they say they are sick or need to take a break. It sounds awful, but my thinking was: “Well, I feel terrible quite often, and I never stop, so why should other people stop? They must be weak. We should all just keep going, keep pushing. Survival of the fittest! (and most stubborn) Yea!”
And we see where this gotten me. Of course, I never said those things aloud to someone claiming illness, and I always acted like I deeply felt for their suffering. (Let me note that this did not apply to all people suffering, as there are certain folks who you can tell without a doubt they are suffering in beyond-imaginable ways).
This illness, this whatever it is, has made me both more and less empathetic to others. At times, all I can think about is the pain or fog or excruciating electric itch I feel. The burning skin, the disorientation, the headaches, the shaking, the exhaustion in the night accompanied by the complete inability to rest and sleep because I cannot find comfort in the body which I reside.
I currently work with people experiencing homelessness in the social services sector. I have many days and moments where I feel their story penetrate my marrow, and I cannot get them off my mind as I try to live out other parts of my life that aren’t my “work.” I deeply and agonizingly am overtaken by the severity and injustice of their various situations. And then I have moments where someone tells me the most horrifying and painful story, and I feel close to nothing. Part of this could be compassion fatigue, hearing people’s terrifying tales everyday, helping others (or at least trying) everyday. You can sort of lose yourself in this. You grow weary of helping others constantly without ever helping yourself. I have seen this in a multitude of people working and serving in the social services field (and in other fields like teaching, health care, child care, etc).
But part of this lack of empathy seems directly related to when I am feeling my worst. As if I have nothing left to give in that moment, because it was all I could do to get up, take a painful shower and drive myself to work, trying to break through the swelling fog that overtakes my vision daily, which glasses cannot remedy.
Whenever someone asks me about my health or wants to know more about chronic illness, it takes about 7.2 seconds before their eyes begin to glaze over like a fresh Krispy Kreme donut. If you haven’t experienced chronic illness, it seems that it’s extraordinarily difficult for people understand and identify with it (and that makes sense). Five years ago, I wouldn’t have been able to understand. I would possibly think someone was likely just not eating correctly and just didn’t have the willpower to do what they needed to do in life. I might think they were lazy or a hypochondriac. (Not that I’m saying folks like that don’t exist. They do, and they are making it really stinking difficult for us with debilitating autoimmune issues and other chronic illnesses to have an accepted and acknowledged place in the world.)
When someone at work questions why I may have to leave the field in order to pursue something more remote, less demanding and on-call, or when they ask “are you sure you need to leave?,” “what about your clients,” I feel almost smacked in the face. Though I know they mean nothing by it, and they just want me to stay on the team. But part of me wants to scream, “IF YOU ONLY KNEW, YOU WOULDN’T QUESTION THIS DECISION AT ALL.”
But I don’t do that, as why should they know or understand what I’m going through when I’m walking through everyday, all day pretending that I’m okay, or even better than okay? Why would they know what’s really going on, when I’m faking being okay?
We want to be understood, we want to be validated. We all do. I want to be understood, but I know that’s a tall order. I can see the lack of comprehension by those who learn I have some sort of chronic illness, the lack of understanding that this is something that affects me on a minute to minute basis. This all sounds all so selfish and pity-seeking to me. I can’t stand to feel this way, but that’s what I am reduced to at moments. I’m writing this as I’m crying on my bed, punching pillows, pacing my bedroom floors, so frustratingly tired and angry and just so sick of being sick. People have said to me before, “One day, you’ll wake up and realize you’re all better, and that slowly it just all went away.” I’ve been waiting and waiting for that day to arrive. I’m tired of waiting, I’m just so tired. I’ve had glimmers of the old me, the one who scaled rock walls and sprinted up mountains. But that person feels far away. I feel like I began to lose myself somewhere around age 27, (when the health issues began) and it’s been a slow and, at times, sudden and harsh loss of myself since then. (My apologies for how dramatic this sounds. Though the Vanderbilt doctor told me I say “I’m sorry” too much and that I shouldn’t apologize for what’s happening to me. Sigh. But anyway….)
I’ve spoken of this before, in writing and in some (embarrassing) videos I’ve posted here and there, but it is as though my interests, my goals, my drive towards something, anything slowly seeps out of my being. Oftentimes, I can’t seem to figure out what it is that I’m interested in anymore, other than researching ways to get well. It becomes an obsession. The sneaky creeping thief continues to slowly eat away at what I thought was me. Sometimes pieces of me return, and I welcome them back like that old piece of clothing you rediscovered in your closet. You put it on and you feel your old self and adventures woven into the threads, and somehow by wearing it, you feel like that old you again. (Maybe this is an experience only I have?) But I digress…
I’ve often wondered what started it all. And I have written about this before, of course. Was this in me the whole time? Did this happen because I took too many antibiotics as a child, because I used too many steroidal inhalers or other oral and topical steroids throughout my life? (I think yes.) Why did I need those things to begin with? Was it all the doxycycline I took when I had outrageous acne in high school and college? Is it what I’ve eaten? Is it our overly-sanitized, chemical-laden world that has brought down my already weakened immune system? Is it because I overwork and over-stress myself in every single job I take? Is it the jobs or is it me? I ask myself these questions all the time, but it hasn’t led me to a “fix” yet.
This is my reality right now. It’s what I know and understand. You’re likely experiencing some sort of reality that I could not understand and maybe I never will fully know or understand it, just as you may never know or understand my reality. But I think we need to share our experiences—to shed light on what is not known to others. (Golly, I sound cliche, do I not? This is the days-later version of myself rereading what I wrote.) Much of my intention for writing, well part of it, is to continually reveal that you never know or may understand what someone else is going through. Many people suffer in silence or just have some sort of experience we may not know or understand, whether it be some sort of mental or physical illness, a severed relationship, death of a loved one, financial problems, homelessness, constant experiences with racism, and a whole multitude of things.
Maybe one day you will know or experience their reality or a similar one, mine or someone else’s, but your experience may occur somewhere down the line. And you can look back to my story or someone else’s and feel some sort of sense of comfort in not being entirely alone.
Alone and isolated—that’s what you feel and that’s what I feel when not understood, when not heard, when my reality and what feels like ‘myself’ goes unseen. (Geez this sounds so dramatic. Again, I’m reading this days after I wrote it, which shows how grand of a wax and wane my mental state and overall mood can be. Another aspect of this chronic illness is the extreme ups and downs of it all. I can and certainly do have good days.)
I want my family to understand. I want my friends, my coworkers, the lady at the cash register, my niece and nephew, my clients and the doctors to understand. I want my husband to understand completely, the one who has been around me the most and seen me at my worst. I want him to understand why I don’t care at all about looking for a new rug for our living room, why talking about sizes and colors and fabrics have no meaning to me.
Marriages with one partner having chronic illness have a 75% divorce rate. How’s that for encouragement? I hate this for my husband, and have often wanted to relieve him of his duty toward me (and have tried to encourage him to do that, but gosh darnit, he keeps sticking around and supporting me). I don’t like being the sick one, the one in need, the one who changes the way we live or keeps us from living how we want. All of this began to unfold very early on in our relationship and became all-encompassing a few months into our marriage, and it has persisted since. So much for the carefree honeymoon phase. Chronic illness places spouses, partners and other friends and family members in such difficult positions.
On a recent Friday, I thought I was going to end the day early for once and was excited about the prospect, when I received a call from a client panicking, as she had just been in another domestic violence situation with the man she’s been with for some time. She was finally ready to escape, and there was finally a place available at a domestic violence shelter (anyone in this field knows that is a rare occasion). Knowing I needed to seize the opportunity before she changed her mind again, I took off across town to pick her up at a random Piggly Wiggly on the side of the road. Through a series of events, the entire process of getting her to the shelter took many hours and inched its way into the evening. This included a run to Sonic for her comfort food, waiting, questioning, panicking, crying, multiple cigarettes smoked (her not me) and a host of other tense and upsetting emotions and conversations. (Along with me peppering in light-hearted awkward things, trying to lessen the severity of the situation. Trying.)
Somehow, my mind and body shut off my ability to feel any of these heavy emotions she was feeling while I was with her (at the time I thought my compassion fatigue had just fully set in). I tried to just remain present and be the comforting yet in-control person she needed. (I’m not sure if I pulled it off, but that’s what I was going for.)
When I finally made it home, walked inside, dropped my bags and changed clothes, it’s as though my body suddenly realized it was time to turn my feeling human brain back on, and a heavy curtain of mental, physical and emotional exhaustion draped over me.
My husband was sitting outside on our back patio, drinking a Topo Chico when I arrived, and I tried to sit with him. It was like his words didn’t have meaning (it sounded the way adults’ voices sound in Charlie Brown, if you understand that reference), or the subject matter didn’t seem important, and my brain didn’t have the capacity to be present with him. (Again, my poor husband). It was as though there wasn’t enough air in any room (or in this case, outside) for me to be around anyone else. Being around any other human’s energy was too heavy and burdensome.
And the rest of the weekend was consumed by worsening physical symptoms, exhaustion, and I didn’t want to leave the house or be in public (mainly because of how I looked due to worsening symptoms).
(Autoimmune symptoms aside, I think this probably happens frequently to people who work in this field or similarly physically and emotionally taxing vocations.)
I’m not really sure why I told this story or really why I’m writing any of this. I guess I just wanted to demonstrate that it’s been difficult to balance caring for myself and trying to care for others inside and outside of my job. It becomes difficult to fake it. I saw a post recently that said “If you have chronic illness, you lie everyday.” And it’s true. Folks with chronic illness and other such health issues often have to feign healthiness and well-being for the benefit of their job, friend, child, significant other, etc. I’m not saying we should be melancholy all the time or tell everyone we encounter all our woes. I guess I’m just saying, sometimes you have to tell your story, otherwise nothing will ever change. (Sheesh, dramatic me again.)
At times, I’m frustrated, furious, despondent and just so mentally and emotionally exhausted. I do have good days though. As I said, my moods, flares and overall physical state wax and wane. And that’s one piece of chronic illness that makes it so difficult—the unpredictable nature of it all. It makes it extraordinarily difficult to plan for the future. I don’t really know what I’m supposed to do right now, I don’t know what job I should be in, when I’ll be better and for how long. What will my life be like in a month, a week, a day or a year from now? I don’t really know, and I’m trying to be okay with that. (Buuuuut I’m not.)
I don’t know how to end this, so I’ll just end it by recommending a book to anyone with chronic illness or who knows and loves someone with chronic illness. “The Invisible Kingdom: Reimagining Chronic Illness” by Megan O’Rourke. I read it and thought, “oh my lord gracious, I could have written this.” (Except that she is a stupendous writer.) I identified with it so incredibly much and it reveals the ambiguity, unpredictability and long and frustrating journey that someone with chronic illness endures (and how we are often delegitimized in mainstream medicine of ‘diagnose and prescribe.’)
ALSO! To end on a positive note: I did feel more hopeful after my most recent appointment at Vanderbilt. More to come. Hopefully more clarity.
Links to previous articles I wrote about my chronic illness: “I’m an illness orphan: part one.” and “I’m an illness orphan: part two.”
https://www.hinsdalelawyers.com/blog/how-chronic-illness-affects-divorce-rates
https://time.com/83486/divorce-is-more-likely-if-the-wife-not-the-husband-gets-sick/
https://www.benaroyaresearch.org/blog/post/diagnosing-autoimmune-diseases#:~:text=Being%20diagnosed%20with%20an%20autoimmune,typically%20has%20seen%20four%20doctors.