A Short Story on the Long Road to an Autoimmune Diagnosis

*Disclaimer: I am not a medical professional. This is my opinion and understanding of my healthcare experience only.

There is a lump in my armpit. 

It’s been there for a while, maybe six months or so, making tank tops look unsightly. But it hasn’t really hurt or bothered me…so, like a girl who hates doctors’ offices, I have just been ignoring it and hoping it would go away.  When I went to see my OBGYN for my annual and it still hadn’t gone away, they sent me for a mammogram and ultrasound.  That ruled out the big scary, Breast Cancer, but left me with a “reactive swollen lymph node”.

 

I promptly named her Nora.  Nora the Node.  I feel like naming things somehow makes them less scary and… cuter?  Anyways, Nora was not breast cancer, but she has been there for a while — which is still weird.  So I #adulted and made an appointment with my doctor to discuss. 

 

Doctors make me nervous.  Especially when I’m meeting them for the first time.  This doc seemed to listen, which was a great start. He listened while I told him about Nora.  I told him about how sick I was last year – I had a flu that lasted almost four months.  I told him how I couldn’t get better.  How when I finally went to the doctor, they found out that I was anemic, and therefore, tired all the time.  How with iron supplements I seemed to bounce back… but then Nora showed up. 

 

Was I still tired?  Maybe?  Aren’t we all tired, always?  I napped every day, sure, but that was normal for me.  Right?  I had dutifully gotten my flu shot this year to avoid this nonsense, and now I was feeling achy – could I be fighting off the flu?  UGH.  Annoying.  My aches felt bone-deep.  In my ankles.  In my wrists.  In my back.  Can I just go home and take a nap now, please?  No? You need blood first?  Fine. Seven little vials of blood later, I was out the door with instructions to get x-rays and come back after Thanksgiving.

 

Oh yeah - it was Thanksgiving.  We were staying put this year, so I didn’t have to travel, which was good —because I could barely make it through the morning without crashing into a three-hour nap.  My body hurt so badly.  My joints ACHED.  My skin HURT.  It felt like when you have a really bad flu, except I had no “sick” symptoms.  No fever, no cold, sniffles, stomach stuff, not even sneezing — just REALLY tired and REALLY achy. 

 

When I tried to go grocery shopping and I couldn’t, I knew something was going on. I call this the Bechtel Grocery Test.  When completing a simple life task (like grocery shopping) is impossible, I know something is up.  Usually it means my depression has made a guest star appearance in my life again, and this felt similar — but also different.  Like, the THOUGHT of grocery shopping was overwhelming (depression) but also, the physical act of doing it was actually too hard (that was new).  I couldn’t imagine being able to stand up and walk around the store for an hour.   

 

I did it anyway.  ‘Cause I’m a “tough” person.  I’ve played sports my whole life, so I know how to “suck it up”.  Not helpful here.  My man insisted on coming with me, and really — he did the shopping, while I walked alongside him.  Afterwards, I cried in the car and slept for three hours when we got home.  I couldn’t get off the couch for the rest of the afternoon or night.  While he studied for law school finals (oh yeah, did I mention all of this is happening while he is in the middle of his first semester of law School?  Great timing, Nora.  Thanks), I lay on the couch and watched 30 Rock.

 

The next morning I woke up feeling… better?  I was certainly able to make breakfast, walk the dogs, and start the laundry before I had to sit down and rest again.  What the HECK was wrong with me?  I only remembered being this tired and sick last year when I had the four-month death flu.  Please don’t let this be the death flu again, I thought.

 

Then my blood work came back. 

 

Did you learn a foreign language in school?  Remember how you could see all those words on the paper, and you knew they made sense to SOMEONE (many someones) out there?  Other people could look at these words and actually make SENSE of them?

 

That’s how I felt when I saw my lab results.  It was a mess of letters and numbers that made no sense to me, but apparently some of them weren’t normal, which is why they helpfully highlighted them in red for me.  Gracias. It was the same when the doctor was talking.  I was back in day one of Spanish class with Senor Sul, as he was jabbering away in Spanish while I sat there listening for context clues and checking for facial expressions that would tell me what the freaking heck he was talking about. 

 

ANA?  Rheumatoid Factor?  Complements?  Serum?  Speckled Pattern?

 

I heard Rheumatoid Arthritis and grabbed on for dear life.  My grandma had that. Wait. Isn’t that an old people thing?  No, he said, this affects young people.  It’s an autoimmune disease where your immune system attacks your joints.  I needed to go get x-rays to see if that’s what was happening to me.  And more blood work to confirm or rule out other autoimmune diseases like lupus.

 

During the next few couch-ridden days, Google was my best friend.  I know they tell you not to Web-MD your symptoms, but you know what? Fuck that advice.  This is my body, my life, and I had some hard science to go on: my first set of blood work. While there are definitely black holes of bad information out there, there are also plenty of websites that are full of great information.  If you know what to look for, and look in credible places, I am all for arming yourself with information insomuch as it doesn’t start to overwhelm you.  For me, having all the info was helpful and calming, so I set to work. 

 

First, I researched autoimmunity.  (Did you know that 1 in 5 people have an autoimmune disease?  Did you know that 75% of them are women?) Then I enlisted my sister, a nurse practitioner, to give me a crash course in blood work.  I reached out to my girlfriends who are autoimmune-literate, and gathered what they knew.  Autoimmune 101 crash course.

 

A few days later, when my email pinged with the notice that my new set of blood work was back, I set to reading it the best I could.  Without boring you to death, here’s the layman’s run down of how labs work when they suspect you have an autoimmune disease:

 

1.     Your ANA comes back positive, which is the first sign — but it’s not conclusive, because about 20% of the population has a positive ANA and is healthy. 

2.     They run deeper tests.  They test for specific antibodies in your blood.   Depending on which (if any) are positive, they can confirm, rule out, or get an inkling of which autoimmune disease you might have. 

3.     They also check out the pattern your ANAs make, and that pattern can nudge them in a certain direction. 

 

So, we are looking for: 1) ANA; 2) specific antibodies; and 3) blood pattern – got it? 

 

My ANA again came back positive. The deeper tests showed positive Ds-DNA, low C4 complement, and a speckled pattern.

 

Ds-DNA is pretty specific for one disease. The speckled pattern and low C4 are in line with that same disease. And since it seemed to match my symptoms, I was pretty sure…

 

I had lupus. 

 

The feeling that washed over me was… relief.  I actually wasn’t scared or upset.  I was relieved.  Relieved to have a name to put on how I was feeling (to have a name to Google and research, if I’m being honest) and validation that I wasn’t being a wuss  - this was more than a flu. 

 

I didn’t know anything about lupus, really.  The two things I thought of when I heard lupus were: 1) HouseMD; and 2) Harry Potter. (High five fellow nerds!)

 

Since you might not know much about lupus either, here is a fast run-down of lupus facts:

 

  • Lupus is not contracted and it’s not contagious.

  • There is no cure, but it can be managed.

  • 1.5 million Americans (and at least 5 million people worldwide) have lupus

  • Lupus is an autoimmune disease, which means your immune system is attacking your body. 

  • It shows up in episodes call flares.  Flares can last from just a few days to a few months.  In between flares, lupus patients can appear to be “healthy” people.

  • In lupus, this means it can attack your organs, your skin, and your joints.  Sometimes all three. 

  • The medical community doesn’t exactly know what causes lupus to show up.  Genetics play a part, but it’s likely that environment plays a part as well.  It seems that an inherited predisposition paired with a particularly stressful event in your life sets it off (over-exposure to sunlight, birth of a child, a really intense sickness, divorce, etc).

  • Lupus is 2-3x more prevalent among women of color.

  • To be clinically diagnosed with lupus, you need to meet four of the 11 established criteria.

  • On average, it take six years for people with lupus to be diagnosed.

 

I actually only kinda sorta have a lupus diagnosis at this point.  Lupus is a tricky disease to diagnose.  It’s called the great imitator, because it mimics so many other diseases.  Diagnosing it requires a combination of blood work and symptoms. I’ve only seen two rheumatologists.

The first was like, “Bing, bam, boom: you have lupus.  We are going to treat you with a drug called Plaquenil”.

 The second was like… “Hmm.  You have some interesting blood work, but I’m not ready to give you a clinical diagnosis yet.  This could be an early sign of lupus, rheumatoid arthritis, or something else. I want to treat you with a drug called Plaquenil”. 

Many lupus patients wait YEARS before they get a diagnosis, so truth be told I think I got pretty lucky that Nora forced me to go to the doctor when I did.  I know that if I didn’t have Nora, I would have continued to tough it out with these “flus” and waited until things got really bad before I saw a doctor.  I’m also “lucky” that my blood work was taken during a flare, which caused the positive ANA and other markers.  I had blood work taken just a few weeks later, once I was feeling better and my ANA was negative (or normal). 

 

This is important because what I want YOU to know, reader, is that people with autoimmune diseases often battle years of disbelief and misunderstanding from friends, family, and even doctors.  Because our understanding of autoimmunity is not complete yet, because testing is complicated and often subjective, and because autoimmune patients can go through cycles of looking/feeling “normal”, it can be a long and frustrating road to diagnosis.  For this reason, autoimmune diseases are often referred to as invisible illnesses. 

 

Not being believed or having a name to put on how you are feeling is an incredibly isolating and defeating feeling.  Having two doctors disagree on what my diagnosis is feels frustrating. Being able to put a name on something helps it be less scary (which is why I named Nora!), so I’m struggling with that. 

 

I’ll be checking back here often in as I travel down this road. When I was in the middle of blood work, I really wanted to read other stories like mine to feel less alone.  I hope to give you a slice of what life looks like while I figure this out so if you are on this long road, you know that others have walked it, too. You can also follow my story on UnInvisible Pod, a podcast hosted by a friend of mine, that tells the stories of those with invisible illness and offers resources such as interviews with various medical professionals who treat autoimmune disease.  It’s pretty great, and has been really helpful for me in these early months.

 

Check it out, and check back here for updates soon. 

X to the O

  • D

Dayna Schaaf