Over the past two years, I have completely lost trust (although I didn’t have much to begin with) in our traditional medical system. Personally, I’ve been dealing with a myriad of symptoms for two years now. Whenever I talk to someone about my experience, I find out about yet another person who has been to countless doctors and undergone a million tests yet still has no definitive answers or concrete strategies to fight whatever it is their body is dealing with — especially after having Covid. 

What resonates with me is the frustration we all seem to have in common. Frustration due to never ending symptoms, countless doctor’s appointments that result in being handed off to the next specialist because our current doctor has no answers, being prescribed countless drugs to try along with a list of possible diagnoses but nothing definitive, (because most of the tests are normal), and feeling like we’re crazy because there are no definitive answers but we keep searching anyway. 

(Of  course I do understand that doctors can be frustrated as well, but I truly believe that if they had more time to dig deep into our history and actually consult with each other, the process would produce more answers and less confusion). 

Today I saw my cardiologist for my six month follow up.  My EKG and blood pressure were fine while my heart sounded strong and steady. I explained to him that I still get occasional chest pain and weird, flip-flop sensations, but apparently that’s just the pericarditis that hasn’t completely gone away. 

What blew my mind though, was finding out that the last rheumatologist I saw had diagnosed me with lupus. And I only found out because I asked my cardiologist to review my chart and flat out asked if I had a lupus diagnosis. I’m sure that sounds strange. How could I not be aware of that?

Throughout this ordeal, my original rheumatologist, whom I saw regularly (but has since left the practice) always told me he felt lupus could be a possible explanation for my pericarditis, but my blood work wasn’t completely convincing. When I followed up with his replacement, he told me he saw nothing in my recent labs to indicate autoimmune issues then proceeded to refer me to a neurologist. He never mentioned a lupus diagnosis. In my chart however, he wrote the diagnosis based on my pericarditis and fluid on the heart as well as a few abnormal blood markers. The cardiologist I saw today agreed that I definitely had autoimmune issues that likely were dormant in my system until a virus (in my case Covid) triggered them to turn on.

So I guess now I have lupus???

What’s so unbelievably frustrating to me is that I stopped taking all the meds after my last appointment because I left thinking nothing Autoimmune related was going on. Don’t get me wrong, I’m thrilled to be off the meds (and so far without any issues), but over the past few months, I’ve allowed myself to dismiss a lupus diagnosis. But now I find out I’ve had it all along?

Honestly, it makes sense given my symptoms these past years and for a while, I had convinced myself I had it. Until I was told I didn’t. Which was actually the day I received the diagnosis (unknowingly).

What the heck? I’m so confused!

That’s what pisses me off. If I wasn’t obsessive about going over all my results and checking my chart online which prompted me to ask about it today, I wouldn’t even be aware of it. When I said to my cardiologist, “Wait, so do I have lupus?” he gave me a bewildered look like he was confused as to how I couldn’t know. Talk about an awkward moment!

Leaving doctors appointments feeling stupid, crazy and confused has really gotten old. I finally thought I was over anything autoimmune related and I had accepted an explanation — Covid triggered  pericarditis, which was part of an autoimmune reaction with long covid which seemed to finally be improving. But now the word “lupus” is back in the spotlight.

In the grand scheme of things, nothing has ultimately changed. I feel how I feel on any given day and a diagnosis doesn’t change that. If a symptom pops up, I address it using all I’ve been told by doctors and what I’ve learned on my own (which has largely been left up to me) . I’m not even upset that I have lupus,  but the way I found out  still leaves me questioning. Perhaps I should pursue a second opinion, but this already was my second rheumatologist and my cardiologist didn’t argue the diagnosis. I’m done bouncing around to different doctors.

This entire ordeal just brings to light how crucial it is for us  to speak up if we are confused,  unsure, or unsatisfied. We need to advocate for and educate ourselves, demand answers and to be taken seriously. And we absolutely must check our  test results, learn what they mean and read everything that’s available to us in our patient portals. I’m always so tempted to just ignore the notification saying my chart has been updated after the visit. But I’m so glad I decided to read what was there and bring it up because otherwise I would’ve canceled further appointments and never would’ve realized I have this diagnosis.

My intent is not to whine and complain about it. In reality, I have so much to be thankful for. I know people who are dealing with severe rheumatoid arthritis, blood clots, chest pain that is relentless, and who struggle just to get out of bed in the morning, so I consider myself lucky. I am not really surprised by the diagnosis. When all of this started happening, and I started seeing all kinds of specialists, lupus was always on the table. I read books about it and educated myself. So the good news is it’s not a complete surprise or something I’m unfamiliar with. I’m extremely grateful for everything I am able to do. I mean hey , when you think about it, I ran a half marathon this spring during a lupus flare. That’s pretty badass. I just wish our medical system operated in a much more reasonable manner. It’s hard enough to hear a diagnosis, but the hoops that we have to jump through and the amount of different doctors we have to see in order to get that diagnosis is just outrageous.

Too many people are frustrated and being bounced around from doctor to doctor without getting answers. Please be vocal and speak up if this is happening to you. There is great comfort knowing you aren’t the only one!