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TJ Wolf

Life With Lupus: Dealing with doctors


Life With Lupus: Dealing with doctors
Bill Oxford/Unsplash


I have the deadly disease known as Lupus. The version of Lupus I have is the most common, Systemic Lupus Erythematosus (SLE). True to its name, SLE is a systemic condition throughout the body. In addition, I have Lupus Anti-Coagulant and Lupus Anti-Phospholipid which causes my Lupus to impact my blood.

So What Exactly Is Lupus?

In short and perhaps unscientific terms, SLE is my own immune system betraying me and deciding to wage war upon various systems in my body. My immune system incorrectly targets these systems as enemies and marks them as invaders. Then it targets my cells, tissues, and organs in those systems for destruction. This destruction begins with the inflammation and its other biochemical weapons and agents to kill cells and shut down organs. My Lupus likes to focus on vanquishing its own perceived axis of evil in the form of my circulatory, nervous, digestive, and musculoskeletal systems.


The following article is intended to be advice and guidance based on my own patient experiences only and best equates to the sage advice of "get a second opinion."
"Dammit Jim, I'm a doctor, not a Lupus detector"Stefan Cosma/Unsplash

Doctors Are Human Beings...

...and prone to mistakes just like the rest of us.

I get it.

I know medicine is not an exact science and is provided by fallible human beings.

But when you are suffering for years from an undiagnosed condition, having a Star Trek-like medical tricorder on hand to get a quick diagnosis would sure be helpful.

I will certainly say that the majority of doctors and healthcare providers I've encountered make a genuine effort to help you.

However, I've encountered a few that dismissed my symptoms and my medical history. These were doctors who looked you over once and made a quick assessment. In the end, it took over 30 years for me to be diagnosed with Lupus. And studies show the average Lupus patient requires 6 years to be accurately diagnosed. That's a long time to suffer.

So I intend to embark on you some suggestions for when you know you are sick, but you are dealing with doctors who don't understand, don't listen, or make assumptions about you.
"gaslighting (present participle) manipulate (someone) by psychological means into questioning their own sanity."Renè Müller on Unsplash

Do Not Tolerate Gaslighting

This is easier said than done, but never ever tolerate gaslighting from healthcare providers. Don't let allow them to get inside your head and convince you that the pain and symptoms you are experiencing are all in your mind.

I can tell you from personal experience that my condition was dismissed several times as nothing more than anxiety, stress, and even once formally diagnosed at a walk-in clinic with "altered mental state" after I had just experienced a Transient Ischemic Attack (TIA) hours earlier.

Over 30 years I was given 6 different misdiagnoses. Many included completely useless medication prescriptions. I took pills for years that solved nothing. But I'm not bitter...well maybe a little.

I've had at least two doctors tell me there was nothing wrong with me, I'm fine, and it's all in my head.

Other things I've heard...

  • You're too young to keep coming to my office
  • It's job stress, find another job
  • Change your diet
  • Meditate
  • You have too many symptoms, that's simply too many symptoms to be possible

Once I was hospitalized for extreme abdominal pain, fever, increased white blood cell count, and internal bleeding. The only misdiagnosis I had the time was Ulcerative Colitis. So based on that I was treated with 100mg Hydrocortisone IVs. I made a recovery with the IVs and rest in about 48 hours. My doctor at the time said that recovery was impossible and insinuated I was a hypochondriac. This was despite the physical presence of vomiting blood and defecating blood in addition to the hospital's own labs.

If you know you are sick and are experiencing symptoms, do not tolerate gaslighting!

Insist on the physician listening, examining, and/or testing.

And if not, consider doing what I cover in the next section and fire your physician!
Owen Beard/Unsplash

It's okay for you to fire your Doctor and hire a new one. You are the boss in the relationship.

Fire Your Physician

You are the boss of your health situation. If you are not receiving the care and attention that you need from a doctor, then you fire that doctor. There are many more doctors out there. Find another one. "Hire" that person to be your next doctor.

And if that person also doesn't listen and provide the care you expect, then you repeat the firing process until you find someone that will listen. I can't stress this enough. Please learn from my mistake. I knew doctors were not infallible, but I kept sticking with ones who were not listening, not identifying the cause, and not diagnosing me correctly.

I fired my first rheumatologist. He was not meeting my needs, not returning my phone calls, and not helping me manage my pain. I spoke with my general practitioner and ask for a referral. When I explained to my general practitioner why he agreed the needs of my care were not being met. He made a referral to a new doctor. I gave that doctor a chance. I now receive some of the best care I've ever gotten and I have never looked back.
Glenn Carstens-Peters/Unsplash

Lay Out "Your Demands" To New Physicians

If you do hire a new physician, then at the first meeting you lay out your "demands". By "demands", I mean your expectations for this healthcare relationship. Be forthright. Say you expect them to listen to your symptoms and meet the needs of your care.

The first time I met with my current rheumatologist, I described how I felt my care was not being met by my previous one. We discussed what my expectations of care were and he agreed. He suggested that based on his workload, he prefeed I work with his nurse practitioner. That arrangement in order to receive the best level of care. This started a great healthcare relationship that has now lasted three years and running.

Also at this first meeting, my new rheumatologist examined my lab work from the prior. He immediately identified issues with my C Reactive Protein levels that were not being addressed. A good second opinion. And no regrets firing the first rheumatologist!
Jude Beck/Unsplash

Bring Support

Another method for getting healthcare providers to listen and actually hear your symptoms is to bring support with you. Support in the form of a spouse, significant other, family member, or friend. I've learned over the years that doctors and healthcare providers are more inclined to listen when someone else is present. Someone who validates what you are saying, your story, and your symptoms.
Ricardo Arce/Unsplash

Moving Target

One final piece of advice, even when labs are conducted for conditions like Lupus, the disease markers can be a moving target. My general practitioner advised me of this. I can have labs done today that show no increased disease activity or flare. By the time my rheumatologist appointment comes around two weeks later, I can be in a full Lupus flare. Something to be mindful of when symptoms persist throughout your life, but lab work is not confirming active disease.

The Wolf Within Me

Lupus is currently not curable. My Rheumatologist uses the analogy that my immune system is a wild animal that we attempt to keep caged in remission with powerful and yet toxic medications. So of course given its “Lupus”, I associate a wolf as the wild animal within me. Frequently the caged wolf is still able to take a swipe at me from within the bars of a cage. And many times the wolf breaks free to wreak havoc on me until medications are increased or added to suppress it again. These events occur despite me taking all my medications daily as instructed. My wolf has its own plans for me it seems. And surprisingly enough, those plans may include me becoming a better person.

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