13 Things People Who Have Lupus Wish Others Understood

13 Things People Who Have Lupus Wish Others Understood

1k
1k
0

Lupus is a chronic autoimmune disease where the immune system attacks the tissues because it cannot tell the difference between sick cells and healthy ones. The condition can affect any part of the body, including the skin and major organs, and can cause inflammation, pain and damage.

Because lupus is an invisible illness, a lot of misunderstanding and misconceptions surround it. So The Mighty teamed up with Lupus LA to ask our readers what they wish others understand about this disease.

Here’s what they had to say:

1. I am not faking, and I am not trying to ‘get better.’ There is no ‘getting better,’ there is only ‘getting by.’” — Jennifer Elliott

A quote from Jennifer Elliott that says, "I am not faking."

2. “I wish [people] understood the sudden feeling of overwhelming sickness that overcomes me without warning when I have to go home early or cancel… Friends get mad or they don’t even want to be my friend any more and it hurts.” — Liv Colantro

3. “This autoimmune disease changes your life and you as a person.” — Annette White-Haas

A quote from Annette White-Haas that says, "This autoimmune disease changes your life and you as a person."

4. “One of the symptoms of having lupus is a lack of emotional, mental and physical energy. That precious energy needs to be distributed thoughtfully in all aspects of life.” — Ritzie-Fierce Apellido

5. “When you have to cancel plans last minute, it’s because you really are not feeling well. The reality of living with lupus means plans can’t ever be set in stone.” — Denise Gallardo

6. I will always be sick. I may have better days and worse days, but I will be sick and in pain from lupus every day.” — Tristen Wuori

A quote by Tristen Wuori that says, "I will always be sick."

7. “Lupus affects young people too. I always get ‘you’re too young to be sick like that.’” — April Hernandez

8. “I trust that you care about my well-being, [but] please trust that I keep myself as informed as possible and make the best decisions I can for my own health. It is, after all, my life on the line.” — Julie Pruitt

A quote from Julie Pruitt that says, "I trust that you care about my well-being, [but] please trust that I keep myself as informed as possible and make the best decisions I can for my own health."

9. “We can’t always be strong and keep up with life every day. Sometimes we just need a break and [to] lie in bed.” —Tricia Badowski

10. “I am fighting the good fight the best that I can.” — Danna Cook Lamphere

A quote by Danna Cook Lamphere that says, "I am fighting the good fight the best that I can."

11. “Although you may not see it on the outside, my insides are falling apart.” — Bridget Cooney

12. “I rarely ask for help but that doesn’t mean I don’t need it.”Rebecca Albertson-Zeigler

13. “Lupus affects all of us in different ways and some days are a challenge, but we aren’t giving up”–Shantell Brown

A quote from Shantell Brown that says, "Some days are a challenge, but we aren't giving up."

*Answers have been edited and shortened.

1k
1k
0

RELATED VIDEOS

TOPICS
, Listicle, Video,
JOIN THE CONVERSATION

When a Doctor Asked Me Why a ‘Young Girl’ Like Me Has 'So Many Problems'

1k
1k
12

Last week I ended up at the hospital because I had muscle weakness so severe I could barely swallow solid food or rise from a seated position. As someone with lupus, I suspected this to be a symptom of my connective tissue disorder. I was seen by four doctors. Three of them seemed very concerned, empathetic and determined to find a cause. And then, after eight hours of tests, one last doctor walked into my hospital room, took one look at me and greeted me with the words, “What’s a young girl like you doing with so many problems?”

I kept my cool by ignoring his comment because my health was literally in his hands, but I was so deflated by his reaction to my illness that I just wanted to hang my head and cry.

It took me almost eight years to be diagnosed with lupus because of similar comments by other medical professionals. It’s because of this “young means healthy” mentality that I avoid seeking medical attention for the majority of my symptoms in fear of being judged simply for being sick.

I don’t think it should be up to a 26-year-old patient with lupus to remind a doctor that not just older people get sick. I shouldn’t have to point out we wouldn’t have pediatric hospitals or juvenile diseases if the young were spared illnesses just because of their age.

I shouldn’t be looked at like it’s all in my head because someone in their 20s should never be ill.

But that can be the reality for teens and young adults with invisible illnesses. The medical community who should be helping us can at times make things more challenging for us. We put so much trust in our doctors to keep us healthy that it can be extremely intimidating to question their authority. But when a doctor comments on our age in such a negative way, we owe it to ourselves and to other members of the young chronic illness community to second guess them.

So next time a doctor asks why such a young girl has so many problems, I won’t keep quiet. I will raise my voice and confidently remind the doctor that 9 out of 10 adults with lupus are women between the ages 15 to 45, according to WomensHealth.gov.

If disease rarely discriminates based on age, doctors shouldn’t either.

Lisa Walters the mighty.1-001

Follow this journey on Damsel in a Dress.

1k
1k
12
TOPICS
JOIN THE CONVERSATION

I Won’t Succeed Despite My Autoimmune Disease. I’ll Succeed Because of It.

331
331
0

I had mononucleosis for four months before the doctors began testing. My deterioration was quick. Within a week, my walk was reduced to a torturous hobble and my arms weighted my shoulders. I was too tired to read, too stiff to chew and swallow, and my fingers were so unyielding that they stood on edge constantly. Fevers made the pain bearable; they wrapped my body in a placating hearth, confusing my mind and alleviating my suffering.

I oftentimes refused to medicate because the fever was a welcome relief from the pulsating pangs that engulfed me. I was now a ghost of my former self, watching soap operas, with my own hair falling out of my head, one clump at a time. Rigorous medical testing ensued. Tests ruled out Lyme disease, syphilis, hepatitis, fatty liver disease, and the doctors seemed confused by my range of symptoms. As my friends began college and talked about classes, rushing and liberation, I stopped talking about medical testing, my diseased body and my addiction to watching Iron Chef when I was too weak to eat.

I finally began hoping, not for a cure, but for a diagnosis. One night, too exhausted and ill to sleep, I began reading the Merck Medicine Manual, using a pen to turn the pages. After considering my symptoms, I diagnosed myself with Systemic Lupus. After I presented my case, my internist agreed to test me for Systemic Lupus Erythematosus. The blood tests were overwhelmingly positive, but still inconclusive, since they make up only four of the 11 criteria that are used to diagnose this oftentimes-deadly disease. After further testing, I had nine out of 11… I had correctly diagnosed myself with what is often an under- and misdiagnosed disease.

My internist immediately referred me to a rheumatologist, who allowed me to schedule an appointment, despite a two-month wait-list of elderly arthritis patients. I begged for relief, and despite being lectured on the cons of corticosteroids, a devastating immunosuppressant whose side effects include an almost unavoidable weight gain, a jump of blood fats and cholesterol, a lowered immune system, acne, and what doctors have dubbed “moon face” (a distinctly round face), I asked my doctor to put me on them that night. I felt alive again. I welcomed the relief, and side effects were just that: inconveniences to an otherwise relatively normal existence.

For the first time in close to six months, I was able to close my fist, an external symbol of triumph, resolution, self-determination and power. I began a very new and different life.

This is when the real work began: physical therapy and Pilates helped me build my stamina. Lifestyle changes followed: no more sunlight, learning to listen to my body, learning to ask for help and eventually being able to listen, adapt and act on behalf of a community of young women yearning for emancipation from pain and for the healing power of health. I started school at the University of Southern California, still on steroids and other immunosuppressant drugs, determined to be a healthy advocate and example for other people temporarily trapped by their autoimmune disorders.

I began working with the Minority Affairs branch of Student Senate, promoting the often-underrepresented Students-with-Disabilities cause. I helped revamp the university policy on disabled students by allowing physically handicapped people to change their class schedules to be more accommodating to their specific disadvantage. Additionally, I began speaking to various university communities about women with chronic autoimmune disorders. I helped to plan a citywide walk in LA to raise awareness and funds for charity. In law school, I wrote about exploring both current law of the chronically ill and disabled in higher education, and explored and proposed new policy that would allow students to complete their degrees with dignity.

I love helping others and speaking about personal power in pain. Through struggle and even more profound triumph, I found my passion. When I found my voice, I realized that I wanted to dedicate my life to giving a voice to those deprived of theirs, to give a hand to those still too stiff to form a fist, and to be the support to those still too weak to be their own backbone.

Earning my law degree and teaching degree are tools that I needed to fulfill my life dream and continue to be an example of energy in a community that is often drained. Through my work, I am able to show that people with disabilities have the power to make a difference. Although I still sometimes walk with a limp, my life since diagnosis has been filled with energy and ambition, and I know that I can continue to succeed, not despite being a woman with lupus, but because of it.

katie schellenberg the mighty

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to help celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

331
331
0
TOPICS
JOIN THE CONVERSATION

Someone Left Her Daughter a Rude Note for Using a Handicapped Spot. This Was Her Response.

8
8
11

Harley Jo Skorpenske, a student at Ohio State University, found a note on her car windshield after stopping into a CVS in Cleveland, Yahoo Health reported.

Evidently, a person left the note after seeing her park in a handicapped parking spot and then walk into the store unassisted. It read:

You should be ashamed! When you take a handicapped spot, an actual disabled person suffers. You were not raised as you should have been.

To The Person Who left This on My Daughters Car,Wishing so much for you to have stopped and talked to this amazing...

Posted by Corinna Skorpenske on Thursday, April 9, 2015

What the note-leaver clearly didn’t understand is that Skorpenske lives with lupus,  a chronic autoimmune disease that can attack any part of the body. It ranges from mild to life-threatening and affects 1.5 million Americans, according to the Lupus Foundation of America.

Despite the disease’s debilitating potential, it has no outwardly visible symptoms.

In response to the upsetting note, Skorpenske’s mother, Corinna Skorpenske, posted a photo of the note on top of her daughter’s handicapped parking pass to Facebook, along with an open letter.

To the person who left this on my daughter’s car,” Skorpenske wrote. “Wishing so much for you to have stopped and talked to this amazing person before leaving this. If you had, you would have known that my daughter has a disease. Since she was 16 years old she has been suffering from lupus. Basically, her immune system thinks her body inside and out is something bad and attacks it. It started with her joints swelling and the pain being so bad she could hardly walk… Please don’t judge a book by its cover!”

The message also details the many physical hardships Skorpenske has lived with and reminds the note-leaver that not all disabilities and ailments are visible.

We never know what burdens people struggle with,” Skorpenske told Yahoo Health. “Often we are so quick to judge or make assumptions, but if we just take the time to ask them, they are often very willing to educate them on it. Their pain and discomfort is real.”

8
8
11
JOIN THE CONVERSATION

Brother's Act of Love Helps Sister With Lupus Finish Marathon's Last 12 Miles

33
33
2

With 12 miles to go, Jessie Russell thought the sun would put an end to her Boston Marathon run.

Russell, 26, lives with lupus, a chronic autoimmune disease — and sunlight can aggravate its symptoms. But just as Russell was ready to call it a day, her older brother, Jeffrey, who’d been following along to take pictures, stepped in.

“Let me just get an umbrella,” he told her, according to The Boston Globe. He went to a nearby toy store, bought a blue umbrella with cartoon sharks on it and ran the last 12 miles with his sister, all the while protecting her from the sun.

Watch the CBS Boston video below to catch a glimpse of the two running with that shark umbrella and to hear Jessie explain what it all meant to her.


h/t Reddit Uplifting News

33
33
2
JOIN THE CONVERSATION

ESPN's Fan of the Year Completely Nails End Zone Dance

6k
6k
1

In 2013, ESPN named Canaan Sandy the Fan of the Year for his dedication to cheering on the Arkansas Razorbacks. Sandy, who has Down syndrome, travels more than four hours each way to watch his favorite team play.

This April, the superfan attended a spring football game, where the team included him in a play that resulted in a touchdown. The superfan celebrated with some awesome moves (caught on tape below). You can feel the joy from here.


h/t SBNation

6k
6k
1
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.