I Am/Have/Be A Chronic Medical Condition
Over the last five years I’ve been dealing/struggling/living with a myriad of health problems and I’ve been seeing behind the curtain of the health system, society’s handling of “healthy vs. unhealthy,” and society’s willingness to toss aside folks that don’t fit neatly in the able-bodied category. So I write this to give just a glimpse of what I’ve gone through and how I’m making meaning of it today, in the middle of a pandemic.
How It Started
Well, I feel like the (not so fresh and hot) 2020 meme “How It Started vs. How It’s Going,” but not so wholesome as some on the interwebs. My story begins with fatigue, joint pain, and numbness in my hands and feet that I simply couldn’t understand.
I was so tired on some days that I struggled to get up and I struggled to get to sleep. I couldn’t understand why my hands and feet were swelling when it got hot outside or why my arms and feet would go numb unannounced in the middle of doing things like driving or reading a book or walking down the grocery store aisle.
I was a hot mess of, “Is this simply a bad position where anyone’s hand would go numb?” or, “Is there something more going on with me?”
So I started talking with a counselor because I needed an intentional outlet so I didn’t metaphorically bleed all over my friends, family, and work (that’s a whole other conversation for later around boundaries and being an Enneagram 1).
We talked about my deep sadness about what was going on with appointment after appointment, my grief around the ongoing loss of my active lifestyle, and my depression. We talked about what was going on with my body, my mind, and the exhaustion of my soul that seemed never-ending.
I was in so much pain even in the midst of my daily routine to which I had been accustomed that I couldn’t ignore it anymore.
I tried to dismiss my health concerns and it wasn’t until my symptoms included horrendous gastrointestinal issues that I literally spent some days primarily in the bathroom (we’re talking 13 trips to the bathroom in a day’s waking hours — that’s the non-graphic version of the story. You’re welcome!). Let me just say that was a really shitty time. *Ba dum tsssss.*
But really. I was either in the bathroom or horizontal on the couch because I couldn’t manage to do anything else. The sound, the light, the joint pain, the numbness…it was all too much. I hurt all over and all inside.
So in the midst of my pain, I began the journey of going to the doctor for all of my symptoms. They ran blood tests, we found abnormalities, I got referrals for specialists, I went to those appointments and did more tests, and still things didn’t account for all my issues.
It got to the point where it felt like I had a full-time job going to doctors’ appointments to try and figure out this elusive unicorn, all the while racking up those doctor and specialist bills. At one point I had seven different doctors because nobody could or would handle my whole body and those concerns. That certainly didn’t help with the depression.
The vicious cycle of being sad, having struggles, and adding a pile of new grief on top of other grief felt relentless.
I didn’t want to be at doctor visits, but more than that I didn’t want all of my symptoms. So I kept going to the doctor visits and documenting all of my symptoms…how often, the severity, and when/how it would start. I started a few medications to help with the pain and continued in my unknowing journey where it still wasn’t adding up.
My symptoms were all vague—tired, in pain, slow to heal from injuries, and some skin problems—so nobody could settle on a diagnosis. That’s when I thought there was a single diagnosis.
My doctors listened, but it felt like they were looking at the symptoms and treating those and yet getting lost in the details rather than listening for what was causing it. I began to see behind the curtain after going to the rheumatologist (that doctor that your grandma goes to for her rheumatoid arthritis or autoimmune stuff) when he told me I had autoimmune issues where my own immune system was mistakenly attacking my own body instead of the foreign invaders. *Cue space invaders*.
My husband and I packed up and trekked to the Cleveland Clinic for a week staycation for more information on what was going on with my body because I didn’t want to wait for my body to fall apart before getting a handle on things, especially if my body was attacking itself. So we spent several days with a team of doctors who took a look at my case and tried to give their thoughts on the matter to speed up my diagnosis process because in the autoimmune community, they say it takes anywhere from about 4.5-10 years to get a diagnosis.
**If you’re still reading, thank you for reading this far**
How It’s Going
I’m currently sitting at twelve different diagnoses on what’s going on with my body. All of them—minus the psoriasis on my elbows—are not visible and will be chronic health struggles.
I still have a team of doctors that have given me a myriad of medicines from vitamins to anti-inflammatories to pain meds to help me exist as a human on the planet. And these will be lifelong conditions that will be with me forever no matter what treatment I use.
But I am learning where and how to slow down. I’m learning how to take responsibility for knowing how to communicate effectively with doctors until I’m blue in the face. I’m learning how to talk with employers about my conditions. I’m learning how to tell and re-tell my story since I am constantly asked by folks I know and love who care and want to know, but can’t keep up with all my body’s changes.
So I wanted to tell it here.
Why am I telling you this?
I write this as an invitation to read one person’s journey, knowing not all journeys are alike, but choosing to sit with one for a little while.
Those of us who are not thrust into sharing our disability stories at every turn, those with visible health conditions, are slowly opening up in willingness to share our stories so we can be noticed and normalized. That is certainly a luxury that not everyone is granted.
I don’t want a “you’re so brave for sharing your story” response because that’s not what this is about either.
And yet the hidden nature of my chronic journey has its own “out of sight, out of mind” struggles. People don’t try to understand that which is not right before their eyes. I don’t fault them for that, but it does make for many situations in my life over and over where it gets hard to connect and communicate because I have to spend so much time explaining before I can even get to an honest “how are you?” reply.
What this is about is witnessing stories of folks who don’t live the health-typical life and normalizing the many kinds of stories that make up our society’s narratives. People are diverse and we need more representation shared across the board.
What Does It Mean?
I won’t get into the nitty gritty of breaking down theology versus ethics versus moral theology here today, though come find me and we can chat. 🙂
What I will get into is that we are social creatures living in shared society together (other than my chronic immunocompromised folks out there… shoutout to my fellow hermits). There are certain questions that can be asked about what our rights, responsibilities, and expectations are for sharing public space with others who don’t exist in the same ways we do, especially in a pandemic.
We can talk about our society’s ethics all day. I will start with our healthcare ethics because that’s partially where I see ethics come into play in my work right now as a healthcare chaplain. I know not everyone is in healthcare, but these are broad and easily applicable to life together in general. These four principles are autonomy, beneficence, nonmaleficence, and justice.
Very broadly, that means individual choice, acting for the benefit of others, an obligation to not harm, as well as equitable distribution of time, attention, resources, etc., to put it plainly. That’s without even adding in religion, spirituality, or trauma, though of course we bring our biases into that conversation as well.
So, those are the principles I’m keeping in mind when I get to ethics in the midst of a pandemic where we are constantly interacting with folks who have different needs.
Takeaway – Not the food. Or both.
At the end of the day, I can’t make your choices for you. I hope that in sharing my story that you make your choices with more compassion. I hope that you are willing to listen openly when someone cares enough to share their story with you, even though you have no right to it or the details. I hope that it stirs you to examine your own biases of what is typical, atypical, healthy, unhealthy, normal, abnormal.
And I hope that it opens you up to broaden those categories or look within to notice why those are there for you.
Because there’s someone there at the other end of those categories who is trying to get through their day in a system that is not designed for them.
I hope that you see the person on the other end of that spectrum and greet them with warmth and friendship. Most of all, listen to them and let them do the talking.
Thanks for coming to my unfinished and ongoing TED talk.
-Your spoonie friend Heather
(Go look up spoon theory)
Heather Moore (she/her) is a native Appalachian, millennial, nerd/gamer, and serial hobbyist who specializes in thinking and writing outside of the institutional box, calling out injustices, and coming alongside people in the messy beauty and quagmire of life. Click here to read more by Heather.
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