“But you don’t look sick”: Living with a chronic, invisible illness.

Hi. Welcome to my story of living with an invisible illness.

I’m here to try to educate others and bring about awareness, and to inform the people I care about what I’ve been going through over the past year-ish. I also hope that others with my disease click on this blog and read through it in an effort to further understand their diagnosis. Thanks for reading 🙂

Let me set the scene. It’s September 2017 in the beginning of my junior year of college. 20 year-old me, is relapsing from a severe anxiety disorder. I started having frequent panic attacks after being in recovery from panic disorder. I was complaining of feeling ill all the time, always feeling like I’m about to get the flu, but never actually having the flu. Constantly having gastrointestinal issues, my stomach burning nonstop, a never-ending appetite, chronic nausea, and abdominal pain and bloating. Fatigue, but times ten. Unannounced, random fevers and body sweats. Goes to doctor. Doctors tells her it’s just anxiety. Goes to other doctor. Suggests it’s anxiety, but treats stomach issues. Tells me to eat more fiber, drink apple cider vinegar, and take an over-the-counter acid reducer. Also takes blood tests. Takes more blood tests.

Blood tests come back abnormal.

I had a low white blood cell count, red blood cell count, and platelet count. Kind of alarming, and it had been like that for over a year. So I got a bone marrow extraction on January 3rd, 2018.

Here are some gems from that day.

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(I’m cringing thinking about how painful this was)

On January 5th, two days before moving back to school after a long, ill-ridden winter break, I get a call from my doctor. She gives me the diagnosis of Mixed Connective Tissue Disease.

“It’s an autoimmune disease. It’s not Lupus, your labs suggest you have your lab tests tell me you have a connective tissue disorder, but I don’t know very much about it.” Um, what? Can someone explain? Because she couldn’t. She didn’t know. Two days before moving back to school after winter break, I am given this information.

Cue me, kind of just frozen, unable to process. I finally got an answer to all of the discomfort and symptoms I’d been having, but the answer left me with more questions. What does this mean? Is it life threatening? What are the next steps? Where do I go? Who do I call?

Over the past year, this is what I’ve come up with.

I have an autoimmune disease called Mixed Connective Tissue Disease (often abbreviated as MCTD).

As a general statement, an autoimmune disease is a condition where your immune system mistakenly attacks itself. Your immune system mistakes normal, healthy cells for bad, invader cells.

The name of the disease is very telling of what it is. It gets its name of “mixed” because it is a mix of a few different autoimmune diseases. It’s an overlap disease, where multiple diseases come together to form one whole disease. Essentially, I got the short end of the stick because I really don’t have one disease, I just have a bunch of diseases thrown together in one diagnosis.

*The next couple paragraphs are kind of mumbo jumbo sciencey stuff explaining the disease, and it is nice to know this to understand it fully, but for people that are not interested in that, then just jump ahead a few paragraphs :)*

Simply put, MCTD is a mix of three autoimmune diseases: Lupus, Scleroderma, and Polymyositis. Generally speaking, The Lupus portion of MCTD consists of widespread inflammation and tissue damage. Symptoms of Lupus include fatigue, fever, weakness, and skin rashes. Scleroderma in a lot of people presents as fingers and hands that are stiff and puffy, but luckily I don’t have that. Unfortunately, another part of Scleroderma is a variety of gastrointestinal issues, and this part of the disease has been significantly debilitating to me. Lastly, Polymyositis is muscle inflammation and weakness involving the skeletal muscles on both sides of the body, mostly causing muscle aches and pains.

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This diagram helped me conceptualize MCTD

To be diagnosed with an autoimmune disease, almost everyone’s test comes back with a positive ANA. ANA stands for antinuclear antibodies, which are indicative of an overactive immune system and most commonly ends up being an autoimmune disease (aka the immune system and body attacking itself). In people with a positive ANA, more tests are performed to check for other antibodies that can help to confirm the diagnosis. Certain autoantibodies tell us which autoimmune disease is present.

The autoantibody that I have is an anti-RNP, which indicates that I have MCTD. Other autoantibodies (anti-DNA, anti-Sm, anti-Ro/SSA, and anti-La/SSB) are indicative of moderate or severe lupus (often involving your kidneys, heart, and lungs).

I often get the question, “So do you have lupus?” and I say no, and people get confused. I’m still confused. It’s so hard to understand, and it’s hard to explain to other people. No, I don’t have lupus, because I don’t have the ANA marker for it, I ONLY have an Anti-RNP, which means that I only have MCTD. Because I do not have any of the ANA markers for Lupus, I DO NOT have lupus.

It’s a lot to digest and to wrap your head around. I think I’ll be trying to gain more knowledge on MCTD for the rest of my life, in all honesty.

A lot of people say, “at least you don’t have Lupus”, yeah I guess you’re right, I’m glad I don’t either, and I’m glad my kidneys aren’t failing, but I do have an autoimmune disease that is life threatening without treatment, AND to top that, I experience symptoms of 3 diseases in one. How’s that for fun? I appreciate the sentiment and attempt at a silver lining (really, I do), but it really just invalidates my disease. But I do realize that yes, I could have it worse. I could have it much, much, much worse. We all could have it much worse. And I don’t. and I’m so grateful for that. It doesn’t get rid of the fact that this disease is real, very much so, and I’ll battle it the rest of my life.

Over the summer, I had many doctors appointments at many different offices. I had lots of blood taken, I went to my regular rheumatologist, a cardiologist,  pulmonologist, and gastroenterologist. I did lots of breathing tests and had an echocardiogram done to make sure my heart and lungs had not been affected by the disease. Luckily, all the tests came back normal.

My rheumatologist kept me on track with meds and attempted to reduce symptoms with a steroid shot. I had a couple of appointments with the gastroenterologist because of all my stomach issues, ultimately leading to getting a colonoscopy and endoscopy. Hands down, this was the most difficult thing I have had to do thus far. For y’all that don’t know, a colonoscopy is when you have a tiny camera stuck up your butt to make sure your colon is functioning correctly. How is that for pleasant? An endoscopy is the same concept, but they put a camera down your esophagus into your stomach and the beginning of your intestines. The worst part was fasting for 30 hours prior to the procedure and drinking a special laxative. I’m not kidding when I say drinking the laxatives was one of the most disgusting things I have ever had, and I’d like to think I’m pretty tough.

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Smiling because I didn’t pass out from the needle 🙂
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The doctor said I wouldn’t be loopy when I woke up…he was wrong (clearly)

Coping and Processing

I have struggled to wrap my head around the diagnosis. It doesn’t feel real sometimes. Actually a lot of the time. It’s almost scary how simple we can come up with a diagnosis through a couple lab tests. Sometimes I think my doctor read the tests wrong, or didn’t do enough testing. Sometimes I think she came to too quick of a conclusion. That the testing is faulty. Or that she doesn’t know enough about my disease to be right (which she admitted to when she called me with the diagnosis). She referred me to a specialist to get more information. Then I think the other doctor didn’t investigate my case enough, that they just went along with my primary doctor’s word, and treated me off the basis of my primary doctor. Sometimes I feel like they don’t care enough to actually look into my tests. That they know what meds work for certain people, and they just gave me this medication because it works for other people with MCTD. But what if I don’t even have it and they’re giving me this immuno-suppressant drug when in fact I’m not actually ill? I’ve gone back and forth with these thoughts for a year.

But then I remember.

I feel. I hurt. I ache. I’m sick. I’m ILL. I feel all of it. Every day. My bones ache with no other explanation. My muscles are tender to the touch. My stomach is burning. I can’t get out of bed. The fatigue washes over me. It feels like all the blood in my body has been replaced with cement. The brain fog is real. My head aches on many days. My knees are stiff. My legs ache like I’m going through growing pains again, except this time I can’t cure the pain with a banana. I used to eat bananas in hopes that the potassium would sooth the pain, but my stomach and intestines can’t digest them anymore. Lord knows if I eat a banana, the pain I feel in my gut will be the most intense pain I’ve ever felt in my entire life. It’s the kind of pain that is writhing, curl-up-in-the-fetal-position-on-the-floor pain, lasting for a minimum of a half hour, up to an hour. The kind of pain where nothing helps. It feels like I ate a rock, and it’s squeezing through my stomach with absolutely no remorse. The kind of physical pain that you didn’t know existed. The kind of pain that bloats my entire abdomen, makes me sweat profusely, turns my entire face red, makes my whole body shake, and sends me into an hour-long nap after from the exhaustion. And the scariest thing? That for a 6-month period, I didn’t know what foods would do this to me. Each bite I took was a risk, a shot in the dark. It was just a matter of time until I felt the pain build up in my stomach, an acute onset of severe discomfort. I think I’ve blocked out half of these episodes, but I did take some pictures throughout the year whenever they’d occur. Here’s two of those (I guess it’s hard to tell here, but my face is red all over and I’m seriously in extreme pain here)

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I found this excerpt from my journal that I wrote in March. It kinda just shows what my headspace was like during this time. It’s funny looking back on things like this because sometimes you forget how badly you felt in the past.

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In March, I had completely lost a sense of who I was because of this disease. Life was only about managing the illness. I was living to survive, not living to live. I was constantly on the phone with doctors, trying to find the care I needed. It was so overwhelming and I felt alone. I’d hang up, and just cry, because I felt like I had nothing left. Some days, it felt like my world was ending. I lost pleasure in the things I loved because I felt ill all. The. Time. I woke up each day and didn’t want to get out of bed because I knew it was going to be the same shit, different day. I felt absolutely useless. Going to class was a chore, just going to the store was a chore. Being social was hard. I isolated myself. I put all my focus into school because I had nothing left. If I couldn’t leave the apartment, I might as well put myself to good use and get ahead on school work. My world was dark from September 2017 (a few months before the diagnosis in January) up until about May of 2018. I couldn’t get out of the cycle of symptoms and confusion and sadness.

Also in March, I was started an immunosuppressant drug called Plaquenil that ultimately gave me an allergic reaction. My neck/chest/wrists got splotchy, my lip swelled up and I sported a fat lip on Easter of this year. Insert those beautiful, attractive pictures here…

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In April, I tried a different drug called Cellcept, and have been on it since. This drug tells my immune system to slow the hell down and to please stop mistaking my healthy cells for bad ones. It’s pretty much sending signals to my body to stop attacking itself. I was excited to try this medication, but my spirit died a little bit inside when my rheumatologist told me it would take about 6 months to kick in. Talk about being led ON. I had to utilize the little patience I had left. I had to take my patience from the depth of my being to just hold on and keep going. I had to trust the process. Trust that things would be better soon. I was losing trust in myself. The strength of my mind was dwindling just as much as my body was, and I prayed to God this drug would help me.

In May 2018, I ended my junior year, the toughest one yet, and hoped that the summer would be good to me. It was, I improved slowly but surely. I had better days, but I still struggled a LOT. My flare-ups got the best of me. Some days totally drained me. But I was smiling, laughing, and loving life again. By August, I was feeling good. Better than I had in so long. Each day I felt a little bit more in control.

I started my senior year with a positive mindset. By October, I realized that it had been a full 6 months since going on the medication. I did it! I made it through. And at that point, I recognized that I was thriving. Thriving? I didn’t even know the definition of that word until this point.

It’s now the last day of 2018, and in 5 days, it’ll be a year since my diagnosis. My life has done a complete 180, and I’m in disbelief. This semester has brought me the utmost sheer happiness I didn’t even know I deserved, but had craved so badly. I have an amazing job as a barista and amazing people I surround myself with. I have achieved a healthy balance in life and I am really proud of myself for that. I have chosen to adopt a present-focus of life, meaning I try my best to sincerely cherish the present moment. I seek opportunities and I just do them, because all I have is this single moment, right here, right now. I’ve found it to be very helpful for my mental health and my overall happiness.

I have to thank the people in my life for being there with me through it all. I feel like this is my Academy award speech, but truly, the genuine human connections I have are why I am here today.

To my parents, I would not be here without you. The financial support you have given without question is something I’ll never know how to repay you for. You love me unconditionally, support me always, and you both are in this with me. You understand that there are days when I need to sleep for 12 hours. You are willing to drive with me to my appointments that are an hour away. You want to figure this thing out just as much as I do. You care about my well-being and health. You are there at the end of the day to hold me when my whole body hurts and I don’t know what else to do. Your support means the whole entire world to me.

To my roommates, I don’t even know what to say. You all have seen me in my absolute worst times of life and in my hardest moments. Teddy, thank you for always asking to pray for me, and doing so out of the kindness of your heart. You are there to listen and to hear me rant when my body isn’t functioning. I don’t know what I did to deserve the way you care. Stephanie, thank you for seeking to understand how I feel. I love being able to talk to you about the science behind my disease. I love when you come home and say, “Listen to what I learned in my class about autoimmune diseases today!” because I know that is how you show love. Rachel, thank you for understanding that there are some days where I just can’t do it. You’ve been there for me for the past 4 years, and I don’t know how to thank you for that. You’re always there, a listening ear, willing to stick by me and encouraging me to take care of myself first. You’re an exemplary human being. Rose, thank you for being truly empathetic. You are always asking “what can I do to help?” and “do you want to talk about it?” and when I don’t know what to say, you accept that, and understand it. I know I can always express my emotions to you without feeling invalidated or dumb. We connect on a truly special level. Thank you.

I want to thank literally everyone in my life because you all have done so much for me. I’m not going to go further into that, because you know that I love you and appreciate every single ounce of support. I’m sorry that I talk about my disease so much. It is definitely a way that I cope and process it all. I feel like I am annoying about it, but that’s something I’m working on. Through all of the struggles, I have gained immense gratitude. I am seriously grateful for every moment I have. From the lows, I have had the highest of highs.

I am so happy. I can’t wait for 2019 – it’s gonna be a good one.

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All my love,

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Hayley

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