Diary of A Non-Tester: Lupus Your Body and You

When it was first suggested that I write about my lupus journey, I at first struggled with what to say about it. In my mind, I could only think about two words. LUPUS SUCKS! Although that would be the shortest blog post in history, I decided to share my experiences during Lupus Awareness Month (May) to raise awareness for this disease that so many persons suffer from around the world.

But what is lupus exactly?

Lupus is a chronic long-term disease that can cause inflammation and pain in the body. It is an autoimmune disease classified by the body’s immune system that usually fights infections attacking healthy tissues instead. Symptoms of lupus include such things as painful and swollen joints, fever, chest pain, hair loss, mouth ulcers, swollen lymph nodes, fatigue I’m the butterfly rash which commonly occurs on the face.

Who gets lupus?

Statistics from the Lupus Foundation of America shows that 1.5 million Americans and at least 5,000,000 people worldwide have some form of lupus. Lupus strikes women mostly of childbearing age however men, children and even teenagers can be diagnosed with lupus. 90% of people living with lupus are women. Lupus is more common in people of color than any other group.

My first interaction with lupus was a friend from childhood who after a long health battle was diagnosed with lupus soon after she turned 11. At that age, it was a disease that many didn’t know of in my country. Less than five years later, I begin my journey with lupus myself.

I’ve been experiencing lupus symptoms for a good chunk of my life. I experienced my first symptom when I was fourteen while visiting my family in Boston. I dismissed what had happened as a figment of my imagination until my sixteenth birthday when I collapsed at my grandmother’s home.

Following years of tests and a lot of money later, I’m a bit closer to figuring out what ails me. I’ve been through every test, been told that my symptoms are all in my brain but after years of uncertainty, I am 99% percent sure that I have a condition called lupus. Now you may be asking why I’m only 99% sure with that 1% of grey area. A few years back, my rheumatologist during one of my appointments explained that I may be one of the few people who have lupus but repeatedly test negative for it even while exhibiting all of the symptoms of the condition.

I often refer to this disease as the “living cancer”. With the right outlook along with the right doctors, insurance policy and medication, it’s quite possible that you can live a long productive life. Still, what is a life with pain anyways? It’s often hard to rationalize how one should set themselves up for a life of pain. What’s it worth to endure well if enduring well is a lifelong sentence?

Knowing this doesn’t keep the lupus worries away. As a non-tester defined by my rheumatologist as someone who has lupus who fails to show a positive result even with all the symptoms presenting themselves, it’s hard to know where I fall on the spectrum. Still, I try my best to muster through life although at a disadvantage. I do my hardest as it relates to my education although, without a positive result, I cannot receive accommodations to make my college experience easier. I try my hardest to stay healthy as it is difficult to afford medical treatment for this disease without insurance. A few years in, due to having the disease, I was dropped by my insurance company). It means that’s for three years I haven’t visited the doctor.

That last paragraph isn’t me pulling a sympathy card or asking for hugs and kisses to make me feel better. Compared to others I’m doing well. Despite the setbacks, I’m in college. Despite the disease, I’ve traveled. In the years since my health challenges began, I’ve been lucky to not have an extended stay in the hospital, unlike others I know. Still, it’s hard as you mourn the loss of your life. Many times, I tell myself that I don’t deserve happiness. As a young single adult, I tell myself that no one they’ll want to marry me and that’s at the baggage that I would bring to a relationship.

Recently in my dating journey, I experienced my first and hopefully last horrible experience in finding acceptance as a lupus sufferer. In the past, my previous boyfriends had always been supportive, even when they didn’t quite understand the disease that took over my life. A long-distance boyfriend in the past often stayed with me during the day like a nursemaid and would report whether I had experienced any seizures during the day to my mother when she arrived home. After that relationship ended, he often checked in daily to ensure that I was doing well. My first serious boyfriend in my early twenties often invited me over to his house, cooked and would accompany me to my mom’s work in the city at the end of the day to ensure that I wouldn’t collapse into oncoming traffic (which has happened before).

During my last relationship (more like a getting to know you period), I walked away feeling more insecure than ever. In the past, lupus had always been a part of me but had never been 100% of who I was as a human being. In this relationship, I was under the microscope and often felt as though my illness was all that individual saw. Still, I can’t blame them. Lupus is a hard disease. Being the caregiver is even harder to deal with than it is for the individual who endures it throughout their lives. Through it all, parents have formed a method to the madness that helps them endure my periods where I am feeling unwell, but they still mourn the loss of my health.

And maybe in some ways I mourn too. I’m mourn happiness. I mourn the last opportunity of a full-ride scholarship to college. I mourn my brain capacity and hate that it takes me much longer to grasp concepts than the average person. I’m mourning my faith and my relationship with God that was so strong in the past but now is so shaky and unreliable. I mourn my teeth that haven’t been strong in years.

More importantly, I mourn myself. Who was I before all of this?

Some days, I wonder if I’ll be happy again even with lupus. I wonder if people like me dealing with such a disease deserve to be happy. I wonder if I’ll find the same things my friends have found. I wonder and hope for the day I don’t have to pretend. I hope that one day that I don’t have to deal with anxiety and depression anymore as a result of something I can’t control.

Most importantly, I pray for a day where I receive a positive result. Then I can be confidently assured that I am a lupus warrior who is proudly dealing with this disease as best as she can.

* this was returned by dictation during a lupus flare on a tiny Caribbean island by a potential lupus warrior

*The month of May is Lupus Awareness Month with May 10th being World Lupus Day

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5 Responses

  1. Violadiva says:

    Thanks for sharing your experiences with this frustrating health challenge. Your descriptions help me understand better – there are aspects of Lupus I didn’t know about until this post. Thank you for writing this amid a period of discomfort so we can see and support you. All my love

  2. Katie Rich says:

    I didn’t realize that 90% of people living with Lupus are women, but now that I think of it, I’ve only personally known women to have it. And I didn’t know that it was more common for people of color. Thank you for raising awareness and sharing some of your personal experiences. I also hope that you can get a positive result or otherwise receive clear answers that may guide you towards treatments or at least peace of mind.

  3. Kay Healey says:

    Don’t give up. Keep fighting for your benefits. I have negative variant Rheumatoid arthritis. My doctor certified this and my insurance pays for my IV treatments. My grand daughter got MS at 17, but searched the internet to find scholarships and was successful. What about Vocational Rehab and Legal Aid for the Disabled? One grand daughter got a scholarship through Voc. Rehab because she is dyslexic. My daughter got a partial scholarship from her Community college and time and a half on testing because of her dyslexia and supporting test scores. The college also paid for someone to keep notes for her so she could focus on listening in lectures. Help is out there, Keep searching. Will the Lupus association give you ideas for help? You are important and have much to offer this world, so fight for medical coverage and educational support. You deserve it. We need you. You have insight that will help others understand and improve life for everyone.

  4. How frustrating this all sounds! Especially the part about being s as non-tester…I love tests that provide answers. Thank you for sharing your experience.

  5. Em says:

    What’s it worth to endure well if enduring well is a lifelong sentence? – I think it is really powerful to reflect on what the value of endurance is if in fact you’re dealing with a chronic condition and endurance is all you can hope for, not relief or victory. I think that would be something worth studying in the context of our Gospel promises (I say this for myself, not as an admonition to you.)

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