Living With Lupus: 10 Things That Drive Us Batty

“This isn’t where I parked my car!” -Eurotrip

"This isn't where I parked my car!" -Eurotrip

It’s not uncommon for chronic illness to lead to forgetfulness or poor short term memory. We know all too well the struggle of losing the car keys, or burning pizza in the oven. Some illnesses, like Fibromyalgia have words for this: “Fibro Fog.” That’s just how common this phenomenon is! Maybe we should start calling it, “Losing-Your-Mind Lupus!”
Too hot! Too cold!

Too hot! Too cold!

Raynaud’s Phenomenon happens when parts of the body (often the fingers and toes) turn ice cold and sometimes blueish during times of stress or in low temperature. This happens due to poor circulation. People with Lupus are prone to this phenomenon, which sucks during the winter! On the other hand, heat intolerance is also common among those with Lupus. So sometimes, summer can be absolutely unbearable for us!
Rapunzel, Rapunzel, let down your…dude, where’s your hair?

Rapunzel, Rapunzel, let down your...dude, where's your hair?

Approximately half the people living with Systemic Lupus Erythematosus (SLE) experience hair loss. The hair can either come out in smaller strands, or larger, more visible clumps. Not only is it annoying, but if there’s a visible difference, it can cause some nasty issues with self-image and confidence!
“Save it? Tell them to go home!” -Singing in the Rain

"Save it? Tell them to go home!" -Singing in the Rain

Lupus is an autoimmune disease, and autoimmunity happens when the immune system sees its own cells as foreign and proceeds to attack the body. There are drugs that can suppress the immune system, and these may help. But because the body can choose to declare war on itself at any time, sometimes, plans change. One minute, we can feel absolutely fine, when five minutes later, we’re in severe pain or discomfort. This is a game-changer when it comes to outings, events or making plans ahead of time.
“But you don’t look sick!”

"But you don't look sick!"

Autoimmune disorders are also commonly known as “invisible illnesses” because of their nature, which is to present symptoms that aren’t visible by others. These are symptoms like nausea, aches and pains, or organ damage to name a few; things people can’t pick up on just by looking at us. Because this is the case, many people with Lupus and other autoimmune diseases have likely heard this statement before…and it is infuriating. Doubt is a powerful weapon. A doctor can deny medication or treatment by doubting us, or a friend can remain skeptical of our pain when we really need someone to talk to. For some of us, earning trust proves difficult, and trust is one of the most important commodities tied to Lupus.
Red tape here, red tape there, red tape, red tape everywhere!

Red tape here, red tape there, red tape, red tape everywhere!

Going to the doctor is no checkup! Those of us with Lupus usually see our doctors regularly to get prescriptions refilled, talk about important health issues and to deal with any of them accordingly. On top of that, blood tests, urinalysis, x-rays, shots and other procedures are a pretty common thing. But more than that, dealing with the system can be a nightmare: keeping our insurance up to date, trying new medicines that can give us awful symptoms, finding the right doctor, paying insane hospital bills, making sure our pharmacy/doctor’s office takes our insurance…it never ends. Since stress is a leading cause of flares (an abrupt increase in pain and symptoms,) dealing with the system can be rough!
My name is Di, but call me “Miss Agnosis!”

My name is Di, but call me "Miss Agnosis!"

Lupus is one of the most difficult diseases to diagnose due to its unique series of symptoms and inconsistent tests. This is because there is not one, single test that can determine if a person has Lupus. (Good) doctors will run several tests, checking to see if certain things, like types of proteins or an increase in anti-nuclear antibodies (ANA screening) are present in the body. Someone with Lupus can come back negative for several or all tests they’ve taken. Also, some doctors will run only one or a few tests before hastily (mis)diagnosing a patient so that they can get on with the treatment. Many of us have had similar problems, and the internet is filled with horrifying testimonies by real people suffering under poor doctors. And it takes the average patient 6 doctors and over 4 years before getting a diagnosis…assuming it’s accurate.
Get the Lupus-Lady action figure, complete with mouth-ulcer action!

Get the Lupus-Lady action figure, complete with mouth-ulcer action!

When you think of an ulcer, you probably think of sores in the esophagus, stomach or intestines. But it’s possible to get ulcers in your mouth, and several people with Lupus have exactly this! These can be mild to severe. At best, they’re small, inflamed sores that go away in a few days. At worst, they’re hideous monstrosities that cause severe mouth pain. Up to 40% of people with Lupus have these mouth sores. Since fewer than half of us have these, this can be a helpful thing to tell your doctor when seeking a diagnosis!
NOW what?

NOW what?

With Lupus, essentially any part of our bodies can be effected at any time: muscles, joints, tissue, nerves, organs, the brain, and even pregnant women. Sometimes, not knowing what’s going to come next is scary. Many people develop symptoms they’ve never had before, and have to manage their lifestyle accordingly. With a good doctor, this becomes an easier feat. Even so, we’re subject to flares that can keep us from work, school and daily life.
“You’re too young to be sick!”

"You're too young to be sick!"

Many young people with autoimmune disorders struggle with being taken seriously. A boy with Lupus would be tougher to diagnose, since 90% of Lupus patients are women, and most are of a child bearing age. A lot of kids, teens and young adults have a tough time getting answers or having their symptoms taken seriously. Sometimes, we’re flat-out looked down upon. But people diagnosed sooner than later can learn to cope with their disease early on and seek appropriate help.

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