“But you don’t look sick.”

 

steph smiling despite battling chronic invisible illness

My heart was racing at 100 beats per minutes. My skin was pale. My hands were cold and clammy…

Let me rewind 48 hours and take you back to Thursday with me.

My legs were weak when I arrived at work and walked down the hill toward the chapel on our school campus. I hadn’t worked out, yet my legs felt wobbly. Our seniors were graduating and every year we hold a Baccalaureate service to honor and celebrate them as they prepare for college and the next chapter of their lives.

I had been battling fatigue for the past few weeks, so I was used to that. But, the constant sitting down and standing up during the chapel service was leaving me lightheaded and uneasy. My heart rate was slow at the beginning. I could feel it; the beating in my chest, the pulsing in my head…slow. About halfway through, however, and around the fifth time I had to stand up, I felt a sudden rush of heat engulf me. It swept upward in a flash, from my feet to my head. My hands went pale, they were suddenly cold and clammy. In an instant I had sweated so much that everything was damp.

My heart started racing…100 beats per minute. I sat. Everyone else was still standing. I concentrated on my breathing. I stared at the floor. I was sitting on the edge of my seat–my back upright, arms straight and elbows locked with my hands resting on my knees. The service went on. I was tucked away in a corner, hidden next to the organ. I leaned over and slowly packed my camera bag….and left.

I wasn’t really sure what to do at this point. I have a habit of waiting until the last second possible before going to the hospital or even calling my doctor. So I searched until I found the school nurse and trainer and asked them to check my blood pressure and heart rate. They did…and then also insisted that I go to the Emergency Room (big thank you and shout out to Stacy and Diana for being there).

So why am I sharing all this?

Because 24 hours later, I was frustrated, exhausted and I don’t have any answers. I want my experience to illustrate how much we need to advocate for our own health–especially when we are battling an invisible illness. Just because it’s invisible and hidden behind a smile 95% of the time, doesn’t mean it’s made up or not there. Let me explain…

For about a month now, I’ve been fighting a fatigue like I’ve never felt before. I’ve been nauseous, lightheaded, dizzy, and did I mention fatigued? Recognizing that this was slightly concerning, two weeks ago I reached out to my primary care physician and asked her to run some blood work. She did and when I met with her, she remarked how healthy I looked and was wondering why I was there. My labs showed I was anemic; but just barely, so it was brushed aside. She saw a note from the nephrologist I went to a few years ago that my kidneys were damaged, so she brushed off the estimated glomerular filtration rate (eGFR) of 50. But, since I was tired she did put in a referral for me to go to the sleep clinic.

Sadly, this isn’t the first time I’ve dealt with being brushed off or had the feeling that I wasn’t being taken seriously because I walked into a clinic looking healthy, active, and young.

In my early 20s when I was finishing my last year of Army ROTC, I had already been hobbling around on a foot that felt like it was being smashed with a sledgehammer every time I took a step. But, being young and stubborn, what choice did I have? I wasn’t going to not walk or not live my life (and it’s amazing what your body will do to mask pain; how it will release enough endorphins to take away intense agony…). So, during one of my weeks in the field, I asked the Lieutenant who was our point of contact where the bus for sick call was. His reply? “I don’t know. Why don’t you run around in a circle and flap your arms and yell ‘sick call! Sick call!’” The words are burned into my memory. I knew something was wrong with my foot, but what did I do?

I put my head down and drove on. Three years later a bone scan lit up light a Christmas tree and showed major activity in my foot. The orthopedic surgeon removed the sesamoid bone and commented that it had doubled in size, it had been fractured in half and was trying to grow back together and heal for the past three years. But what happened during those three years? I worked my butt off, pushed through the pain, earned the honor of being the top graduate at my Officer Basic Course, and I smiled…the entire time.

Steph wearing Army uniform and hiding pain behind a smile

When I started having blood with my bowel movements, still in my early 20s, I finally got up enough courage to see a doctor at the school clinic. The explanation for the bleeding was that I had a fissure, and I was sent on my way. I knew something was seriously wrong with my colon, but what did I do?

I put my head down and drove on. I silently prayed every day that I didn’t have colon cancer. The more time went by, the more I learned to ignore it. I finished college, I pushed my body through fitness competitions, I took 800 mg Ibuprofen multiple times a day, and I smiled…every day.

A couple years later when the bleeding from my colon hadn’t stopped and I was starting to suffer with intense bloating and abdominal pain after eating. I knew something was wrong. But, at that point, I was also dealing with a miserable work environment, a bad marriage, and my emotions were fluctuating between anger and sadness. (No surprise–hindsight is 20/20–when I look back and realize how miserable I was from work and my marriage and battling Crohn’s Disease that was still undiagnosed.) But, my doctor just focused on my emotions and referred me to an OB/GYN, who’s solution was to do exploratory surgery and take out my appendix while she was in there. What did I do?

Well, for starters, I said no to surgery; but then left with a prescription for antidepressants. So once again, I put my head down and drove on. I stopped eating, I became fearful of food, I became obsessed with food, I started using enemas, I silently cried myself to sleep at night, and when I went out into the world every day, I put on my mascara…and a smile.

I didn’t need antidepressants.

I didn’t need Ibuprofen.

I needed the medical system to recognize that behind my smile, there was something really wrong. As my fellow Crohnies know, the medical pain charts mean nothing to us. My foot felt like a sledgehammer was crashing down on it repeatedly and the world saw me smile. Crohn’s has made me feel like I’ve been shot in the gut, swallowed glass shards, brought me to my knees when it felt like my intestine ripped in half from a vagus nerve spasm, and the world saw me smile.

So, back to my original story, Thursday in the Emergency Room. The nurse gave me an IV and a bag of saline. The doctor came in and asked a bunch of questions. Jeff waited with me. I slept. I was freezing cold, my hands were ice cubes, and we waited. A few hours later the nurse came back in and said my blood work was immaculate! He asked if the doctor had been back to talk to me. No. In fact he never came back to talk to me. It might have been the biggest insult yet, that the ER doctor wouldn’t come back…as if I wasn’t worth his time. The “diagnosis”? I was dehydrated. He didn’t need to say it, his actions said it. Once again, I was young, active, and healthy, and not worth his time.

But no one wants to ask the bigger question, why am I dehydrated when I drink 10+ glasses of water a day. Why am I battling fatigue, nausea, dizziness? Why did I suddenly drop 3 lbs in 36 hours? Why did my heart rate spike to 100 beats per minute? And, why am I the only one concerned about my eGFR?!

After taking some time to process what happened, I woke up Friday morning and called my primary care physician. I wanted to see the blood work for myself (in the chaos of the ER visit, not seeing the doctor again, and just feeling lost, I didn’t ask for a copy then and there). Unable to fax the results to me, the nurse told me the results over the phone. At first she sounded pleased to say my CBC was normal and looked great. Then I asked about the urine testing and she started looking deeper. Turns out, the ER failed to mention that there was indeed blood in my urine and an elevated creatinine level (which she, too, brushed off and said it was a result of my dehydration).

At least the blood in my urine got her attention, though. I asked for a referral to the renal clinic (again), explaining some of my history, but she said I would probably only be referred to the urology clinic…even despite being seen by a nephrologist in the past.

Coinciding with all this, my bowels are acting up. Not with bloody diarrhea like I usually get with Crohn’s, but this time with chronic constipation, white spots, mucus, and discoloration (apparently the more I write and keep my blog going, the bolder I get at sharing these details!…). So the one bright spot in all this is my gastroenterologist who did in fact schedule me for a colonoscopy in a couple weeks and an MRI in about a month. But right now, my greatest concern is my kidneys…and as I frequently reach for laxatives to help with the chronic constipation, I can’t help but read the label and see the warning for people with chronic kidney disease. I don’t really see any other option, however, so I keep taking it and crossing my fingers I’m not doing more damage than good.

So here I sit, writing and wondering why I’m the only one looking at the big picture and trying to put all these pieces together. And since you might be wondering why I’m so concerned about my kidneys amid all these other random symptoms, it’s because when I look back through my lab values over the past year, the thing that jumps out at me and scares me the most is seeing that my eGFR has fluctuated between 50 and 45 since June 2018. In addition, my latest microalbumin:creatinine ratio was high. While every doctor I tell this to dismisses it, every single kidney website or reference document I come across says that an eGFR below 60 for more than 3 months indicates Chronic Kidney Disease Stage 3a and should be addressed by a doctor. So why do I feel like I have to fight tooth and nail to get to the renal clinic? Don’t believe me? Here’s what the National Kidney Foundation says:

“What is eGFR? eGFR – Estimated glomerular filtration rate is the best test to measure your level of kidney function and determine your stage of kidney disease…A eGFR below 60 for three months or more or a eGFR above 60 with kidney damage (marked by high levels of albumin in your urine) indicates chronic kidney disease. Your doctor will want to investigate the cause of your kidney disease and continue to check your kidney function to help plan your treatment.”

And just for reference, if you’re wondering what a normal eGFR range for healthy people is, the National Kidney Foundation says:

“In adults, the normal eGFR number is more than 90. eGFR declines with age, even in people without kidney disease. See chart below for average estimated eGFR based on age:

Kidney Foundation chart for normal eGFR levels
https://www.kidney.org/atoz/content/gfr

“The earlier kidney disease is detected, the better the chance of slowing or stopping its progression.”
https://www.kidney.org/atoz/content/about-chronic-kidney-disease

So let’s handle this now!! I’m less than two weeks away from turning 38. I don’t want to wait until I’m in kidney failure to finally “look” sick and have someone realize that I should have been doing something different a long time ago. Again, I’m left scratching my head as to why I seem to be the only one concerned about this.

Which is a long way of bringing me to my point that YOU know your body best. YOU are your own best advocate and YOU owe it to yourself to fight for yourself.

Do I want to be sick? No. Do I want Crohn’s Disease? No. Do I want kidney damage? No. But these are the cards I’ve been dealt and I want to know what my hand is so that I can come up with a strategy to win this game. I don’t want to ignore the warning signs my body is clearly giving me that something is worsening or going awry.

I may not look sick, I might be smiling, but I need help. Are there other people worse off than me? Yes, of course. And I’m especially reminded of that every time I walk into the hospital to receive care, because I receive care at a Department of Veterans Affairs hospital. But just because I don’t look sick or because I haven’t hit rock bottom with my health, doesn’t mean that I am less worthy of being taken seriously or getting the care I need to be well and feel my best. I am worthy. And I would rather take care of these things now before they get worse.

To my fellow invisible illness fighters–whether it’s Crohn’s Disease, Ulcerative Colitis, or another illness–I know it’s exhausting. I know it’s frustrating. But that’s why I want to remind you how important it is to keep fighting, to speak louder, to be heard, to be seen. With chronic illnesses, we often do not fit neatly into one little box. Often there is more than one thing going on and separating those things out can be difficult if you or your physician are not up for the task. But, do not doubt yourself. YOU know yourself and YOUR body better than anyone. YOU can see the bigger picture. YOU know when something’s not right. Keep pushing, keep searching, and don’t stop until you get answers. The fight is hard, but you can’t give up…you’re fighting for yourself and you are worthy.

My story doesn’t end here, this is merely one chapter. And, like any good book, its ending on a cliffhanger. I don’t know the outcome yet. I don’t know if this is merely a small hiccup or a large mountain to climb. There will be many more chapters ahead and the road in front of me is not smooth…it continues to be one long and rocky road (uphill and in the snow, too).

Stand up for yourself. Fight for yourself. Be heard.
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Finally, below I go, here are three simple tips I have for becoming a better advocate for yourself:

1. Keep a journal and take notes of your symptoms (normal or otherwise).

There are two apps I use that help me organize my thoughts and track my symptoms. The first is a mobile app called Life Period Tracker. I’ve been using it for over four years, yes originally to track my period, but it does so much more. In the premium version you can use tags and notes to track fitness, nutrition, medications, health symptoms, and more. You can even create custom tags and categories to track whatever you want. Then you can even export your information and analyze it in a spreadsheet (if you like that sort of thing.)
https://itunes.apple.com/us/app/life-period-tracker-calendar/id703547387?mt=8

The second app I also like to use is Evernote. It’s a great tool to clip articles and organize information from the web, and you can create your own notes to jot down symptoms, make notes of what you want to remember for your next appointment, or anything else you can think of.
https://evernote.com/

Obviously writing helps me, but even if you don’t want to start a blog, consider keeping a journal and taking notes to track how you’re feeling and what you’re doing.

2. Ask your doctor to go over any blood or lab work with you in person and in detail.

Don’t be satisfied with a simple statement of “your labs look good.” Ask your doctor to go through them with you and explain anything that is out of the standard normal range or just out of normal for you. Also, don’t be afraid to start looking at the results yourself. Get copies of your records and be informed of what’s happening with your health. Chances are, you are going to be the only one with truly a bird’s eye view of what is happening with your own situation and your health.

3. Finally, don’t stop asking questions until you are satisfied.

This is a partnership between you and your doctor. You should never be dismissed or made to feel like you can’t ask anything. I’ve sat in offices before with a question on the tip of my tongue that I never asked, only to get home later and regret not asking. If it’s on your mind, ask.

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Now, if you kept reading and made it this far, thank you.

If you are fighting an invisible illness, stay strong.

If you are a loved one of someone battling an invisible illness, your support is needed.

And, finally, if you are a healthcare professional caring for those of us with invisible illnesses, please see past our smiles.

4 Replies to ““But you don’t look sick.””

  1. Keep it up, Stephanie! You can do it! Thank you for sharing your experience with illness. You never know what the normal-looking person walking past you is going through, and they may feel isolated in what they’re dealing with.

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    1. Thank you! I will continue sharing, writing, and hopefully helping 🙂 I know I’m not alone in my experiences like this, so I hope we can all start fighting and building the support we need to stay healthy; we never know what’s behind a smile 🙂

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  2. Don’t feel you have to use laxatives, saline / enemas aren’t too bad. My wife uses them for constipation when her fiber intake just doesn’t do it. I used one recently in my colonoscopy prep when I was 8 hours post golitely and no poop. It really want bad. The package does warm about use with renal issues, but I assume it is better than an oral laxative?

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    1. I think it might be potato pahtato when it comes to laxatives 😉 Not sure any of them are great long term solutions, but I’ve certainly used my fair share of fleets enemas. I’ve been worried about developing a dependency on them, so my GI doc recommended I use Miralax…so I’ve been using that lately…I guess variety is good, right 😉

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