Ask Me Anything: Volume 1

An avid Redditor, I recently posted an “Ask Me Anything” regarding my condition in order to prep for the launch of my blog.

I've found in situations where people don't understand chronic illness, people tend to be afraid to ask serious questions in fear of offended the person with the condition. It's true that some people are touchy due to idiot remarks like “you don't look sick” or “when will you get better?” And admittedly, sometimes we can appear guarded because of this.

But ignorance and earnestness are not the same as stupidity – I know that people have relevant questions. I wanted to create an angst-free environment where people could feel comfortable to ask anything and everything.

The questions I got were pertinent, legitimate, interesting and very thoughtful!

DalkonShield asks:

“What is your autoimmune disease?”

Systemic Lupus Erythematosus, AKA, “lupus.” An autoimmune disease happens when the immune system sees good cells as foreign cells and attacks the body. Each autoimmune disease works differently. Someone with Crohn's will have more gastrointestinal problems, and a person with Thyroiditis will have trouble with their endocrine system, hormones and glans.

Lupus is unique in that its symptoms are pronounced yet very strange, seemingly random at times. This can make lupus terribly difficult to diagnose. There is no one test for lupus. Doctors often times rely on observing their patient's symptoms. Common lupus symptoms are: butterfly rash, hair loss, mouth ulcers, icy fingers and toes (Raynaud's Phenomenon,) breathing/chest problems, and kidney trouble. See? Very strange symptoms!

waheveH asks:

“How do you tell people you have a chronic illness? How do they react?”

Usually, it comes up eventually in conversation. This is a good example of it coming up naturally, resulting in further inquiry:

Idle conversation is usually how it comes up, focusing on one topic or another. Living with a chronic illness is just so pertinent that it applies to lots of normal situations, like hair, food, sleep, etc.

Most people respond simply by being interested. A lot of people don't really know about lupus, but seem curious about it. I never mind explaining. Knowledge is power! Though sometimes, people don't know what to ask, or don't want to pry.

There have been a few people who reacted badly, but these people were clearly set in their ways and very obviously couldn't imagine being sick each day. I'll usually do my best to educate them. If they still don't understand and refuse to try, then I walk away. People acting negatively due to ignorance is one thing, but purposefully propelling one's stubbornness in lieu of trying to understand others is simply irresponsible, with no dignity, and I don't tolerate it.

truewire asks...

“What are your day to day struggles living with Lupus?”

There are 2 types of struggles I deal with: physical and emotional. The most influential day-to-day physical symptoms often include chronic fatigue, back pain, inflammation and sleep problems. Sometimes, getting up to work or play isn't an option. But there are good days too, and I cherish each one! I also have to properly manage my medications daily.

Emotional struggles often feel more tiresome than the physical symptoms. Sometimes, I feel guilty for not being able to do things normal people do; if I can't work or help others, I feel bad about it. But feeling judged is one of the worst feelings of all, especially when doctors or “friends” are the ones doing the judging.

In short, I have to learn to manage my symptoms in the most effective way possible and come to terms with having a lifelong illness. I have to be okay with myself as a person, too. Basically, holding onto hope and faith becomes essential, because some of the daily struggles of lupus would tear a person apart without a balance of good in their lives.

~ Fin

Doing this AMA was a life-changing experience, because suddenly, people were coming out of their shells to ask the big questions or talk earnestly about their own problems. It became a safe environment for people to express their problems and keep from judging others based on things like the severity of their pain or how they look on the outside.

Submit your own question!

If you have a question about my condition, whether it be a question about health, lifestyle or something more personal, you can send your questions to:

NikeNicholson@gmail.com

Or, send your name, email address and question in the "CONTACT NIKE" box on the left menu of this blog. Don't be shy! Every question helps fuel the blog and rally support!

Stay hopeful and fight the good fight!

- Nike