I'd like to say at the outset that I'm not writing this so that you feel bad for me. I'm writing it because when you poke around online about chronic illness, its not easy to find stories of youngish people who are living with something like this. What I've found via internet searches and social media hashtags make me feel a little bit gloom and doom. I sometimes feel like because my Instagram isn't
consumed by pictures of my illness and my treatment that I didn't really fit anywhere in the community of people who have what I have.
But I think there must be other people who have the same mindset about their chronic illness that I have, so I'm sending this into the internet. If you're someone who has a chronic illness (or you know someone who has one) and what you read here sounds familiar, then I hope I provide you with a little less gloom and a little more glitter.
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I come from a family of "it could be worse!"-ers. Any time something annoying/upsetting/bad happens, there's a resounding chorus of "it could be worse!" in my head. Its how I was raised and I'm thankful for that on nearly a daily basis. It reminds me that I'm so lucky in so many ways.
But I read somewhere recently that having the outlook on life of "someone has it worse than me" sometimes can invalidate the feelings you have about a particular issue or situation. For me, I think that is absolutely true when it comes to my chronic illness. It could be worse. So, so much worse. But I'm 27, I have a chronic illness and it fucking sucks. I don't curse a lot on this blog but there it is.
Three days before I started my Masters program at Penn, I got a fever.
Rewind. I had just moved back in with my parents after living in New York for five years and immediately upon my return, I got a sore throat. And a post nasal drip. I went to my primary care physician's office twice and saw two different physician's assistant. Both times they told me I was fine, but after whining at my second appointment, the guy caved and gave me an antibiotic.
Two days later and three days before I was supposed to start at Penn, I woke up with a rash on my arms and a fever. The next day I was supposed to start my Graduate Assistantship in the School of Education but when I woke up that morning, I was so exhausted and had such a temperature that I had to call in sick...on my first day of work (cue a lot of crying and a hefty dose of anxiety over making a terrible first impression). Instead of going to my first day of work, I went back to the doctor that day and saw
another physician's assistant.
"Mono," she said "you definitely have Mono. That't why you have the rash on your arms...its the antibiotics reacting to the Mono in your system." I told her that I had had Mono my Junior year of college and that I was pretty sure that't not what it was. "You definitely have Mono," this non-doctor told me. "Stop and get your blood taken on the way out and we'll confirm." This was on a Thursday morning.
Late Friday afternoon I still felt terrible and the Doctor's office called. "You need to come in tomorrow morning" the receptionist said. "And you need to bring your parents". Let me tell you that hearing you have to go see the doctor on a Saturday morning AND bring your parents is something no 22 year old wants to hear.
We went to the office early on that Saturday morning (me in sweatpants, my dad in a sports coat and my Mom with a full face of makeup on-when we get bad medical news in my family, we like the people we're with to be dressed to the nines) and the doctor told me he thought I might have Lupus.
Lupus.
Lupus.
Lupus. Immediately the chorus of "this could have been so much worse than Lupus" started in my head.
He sent me to the hospital to get a million tests (maybe I had a bacterial infection from the wisdom teeth I had removed two weeks before?). They took so many vials of blood that they made me wait an hour before I left. I went home and slept the rest of the day.
After that scary Saturday, I started to feel better. I started school and my Assistantship and I started to make peace with the fact that I might have Lupus.
The doctor called a week later to say I didn't have Lupus (seriously?!) but that my numbers from my blood work were all out of whack. Basically all of the numbers they check for when you get blood drawn? Mine were all wrong. He referred me to a specialist (which I think is the sign of a good primary care physician) and told me to come back in six months.
I went to see the specialist and he took
more blood. Three months later my numbers were still wrong, but I felt fine. Other than being exhausted all the time, I was back to normal...but I was in graduate school and commuting to Philadelphia and working and driving to New York every other weekend to see John. Being exhausted seemed like it was expected at this point in my life.
The specialist told me what symptoms to look out for and to keep coming back every six weeks to check on my numbers. I had no symptoms for the entire Fall semester. My numbers started to return to normal and the whole thing seemed like it was just a fluke. A really scary fluke.
Christmas passed and the Spring semester started. I felt the same as I had felt for most of the Fall: productive, missing John, loving my program at Penn and my new friends there but still...exhausted. All normal things, I thought.
And then in February my ankle started to hurt. Not a lot, just a dull ache. I had what felt like 900 papers due and I was so, so tired. Joint pain was one of the symptoms I was supposed to look out for, but I was driving a lot to Philadelphia and New York (maybe I had drivers ankle, is that a thing?) and it didn't seem like that big of a deal. Until one night a few weeks later, I came home from work after running our major admissions event for three days straight and preparing for a job interview I had later that week at Columbia. I was trying on the new dress my Mom had gotten me for my interview (because she's the best Mom).
I came out in my dress (which was a great dress) and my Mom looked a little bit horrified. Which was upsetting because I thought I looked great! But then I saw she was looking at my left foot and realized what was wrong. My ankle, foot and up my calf looked like it had gotten sunburned..and I realized it was hurting more than it had.
Back to the specialist we went later that week. More blood work showed that my numbers were all out of whack again. And I finally got a diagnosis: a type of autoimmune arthritis which was currently only in my ankle.
The doctor seemed confident that I had a relatively mild case that had resulted from that weird (not Mono) virus I had earlier that year. He prescribed me an NSAID to take to bring down the inflamation that I had and that was it. My Mom and I high tailed it to Sephora because we like to buy lipstick when we're upset and slowly but surely I started to make peace with my autoimmune system and my achy joints.
I kept seeing my Rhuematologist until I was ready to move back to New York that summer. At which point he said I absolutely needed a Rheumatologist in NYC and that I needed to stop wearing crappy flats and sandals from Target because apparently I needed shoes "with support" (kill me).
I found a doctor who I like (after a relatively terrible experince at NYU Langone) even though her office is so far east it might as well be in the river. I got on a treatment plan that worked (more or less) and I embarked on my new life of living with John and working my first full time job. I had a few flare ups here and there, but all of them were pretty mild (I know now) and we got them under control pretty quickly all things considered.
But then this summer I got sick with the most significant flare I've had to date. I was sick for almost four weeks before I decided that I should go back uptown and basically into the East River to see my doctor. She said I needed to get an MRI so down I went to take a nap in radiology (I fall asleep every time, the loud noises lull me to sleep for some reason?). Two days later she called to say I needed to come in the following week and that maybe I wanted to bring someone with me.
So my parents drove to the city from Pennsylvania, my dad in a sports coat and me
and my Mom with a full face of make up on and we walked into the Hospital for Special Surgery on a beautiful autumn day after nearly ten weeks of aching and exhaustion and puffy joints. My doctor showed us my MRI and said that my arthritis had spread. That we needed to take a more aggressive stance with my treatment to prevent further joint damage and to make me stop feeling like a 90 year old woman. I needed to go on an injection that I would give myself every other week. A nurse would come to my house to teach me how to inject myself, and the medication would get delivered to my door.
I smiled and said that was fine. I looked at my parents and they smiled. My Dad went to get the car out of the garage and I went into the bathroom and promptly crumpled into tears. Until that exact moment, I hadn't felt like a sick person.
I felt totally normal except that sometimes I had to take pills. I felt like a person who sometimes got exhausted really easily. I felt like a person who occasionally walked to SoHo on her lunch break and then couldn't go to Spin class later that night because her joints were just done for the day. I felt like a person who was occasionally
homicidal on a packed train because I just wanted to sit down and I didn't look like a person who needed a seat...and how do you say to a stranger, "Excuse me sir, but I have an autoimmune arthritis and could I please have your seat?" I felt like a person who occasionally had to make the trek to the East River to see her specialist.
And then I realized that I felt like a sick person. For four years I had felt like a sick person who had a chorus of "it could be worse" singing in my head.
So on a Wednesday night in October my Mom and Becca came to sit with me while the nurse taught me how to inject myself. My Mom bought me washi tape with skulls and hearts to mark injection days in my planner.
Every other Wednesday night, I come home from work and take my medicine out of the fridge. I let it warm up while I cook dinner and after I do the dishes, I inject myself with the medicine that at this point is really working. Sometimes it hurts more than others. I've started blasting remixes of I Wanna Dance with Somebody and singing the lyrics at the top of my lungs when I stick myself to take the edge off.
Since October, I've gotten progressively better. I was able to wean myself off of some of the other treatments I've been taking, I've been able to start Spinning again (three classes last week, which was
huge for me) and two weeks ago I walked all over SoHo on my lunch break
and went to the gym at night. I still get tired, and my joints sometimes still ache, but overall I feel like
me again.
I still don't really feel like I
fit anywhere in terms of my illness. I'm still not crazy about what I find on social media and I certainly don't fit with the elderly people who sit in the waiting room with me at my Rhuematologist's office.
I'm 27 years old and I've got a chronic autoimmune disease; its unlikely that I will ever not have to live with this. But when I got diagnosed I bought a boat load of lipstick. And when my doctor told me I had to go on an injection, I went out for pizza with my parents. And on nights when my injection hurts a lot, John hugs me so tight I feel like I might pop like a balloon.
When I feel sick I sit on my couch with my cats. But when I don't feel sick (which is more likely than not these days) I go out with my friends to Happy Hour, I go on adventures in the city with John, I go to Spin class and I Instagram pictures of my cats. Sometimes I Instagram a picture of my injection or an ice pack on my ankle, but most times its Dilly and Zula. Because my illness is a
part of my life, a crappy part of my life. But its not my whole life.
And when all else fails, I blast some Whitney and sing in my kitchen at the top of my lungs.
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