Giving a Voice to an Invisible Illness

Since my sister Nem’s diagnosis with Lupus I’ve been wanting to chat with her about her daily struggles, in order to share her words to give friends and family a better understanding of what she is going through.

During a recent trip to Fredericksburg we finally had a free moment to talk over breakfast about her life with Lupus, and what she so simply descibes as her new normal.

This woman I spoke to, she’s another version of the sister I grew up with. In some ways I’m reminded she’s the same, but mostly she’s different. She’s tough, she’s disciplined, she’s faithful, and she isn’t going to let any old illness take control over her life no matter how extreme it attacks her body. No matter how invisible.

When were you diagnosed with Lupus, and what was your immediate reaction?

On September 24th 2012 I was diagnosed with Lupus as a primary disease, & Sjogren’s Syndrome as a secondary disease. The doctor told me on the phone that I had a positive ANA test which meant that I had autoimmune activity going on in my body. I went to a Rheumatologist for more blood work, and she told me I had Lupus and Sjogren’s.

I immediately started taking PlaquenilA common Lupus medication. My initial reaction after the diagnosis was shock. Sean called while I was in the pharmacy waiting on my prescription. He asked how the visit went. It wasn’t until that moment that it hit me, and I just started crying when I told him I was diagnosed with lupus.

What are typical daily tasks that you find yourself unable to do?

I have good days and bad days. After 2.5 years on medication, several detox diets, and learning to listen to my body, it’s gotten better. At first, I wasn’t able to complete my Saturday morning routines of running errands and cleaning my home, I had to discontinue rigorous exercise, and I often wasn’t able to make it through a work day. 
My new “normal” requires that I actively listen to my body and rest when needed so I don’t wear myself out. I need to get plenty of sleep and reduce stress as much as possible. If I don’t, my body will go in shut down mode, leaving me unable to do anything. I’m always reminded that Lupus is there even when I pretend it isn’t. Whenever I push myself, I always pay the price.

I was devastated because I’ve always tried to maintain a healthy lifestyle by working out and watching what I eat, but my efforts couldn’t have prevented what was going on in my body. I didn’t do anything to cause this, it just happened and there was nothing I could do about my body attacking itself. I was relieved to finally have a diagnosis after months of not feeling like myself, but I wasn’t prepared for the emotional distress that it caused. I soon became depressed and continually grieved for my old life. I would see people on social media living their lives (fun outings, working out, etc…) and I made myself miserable by comparing myself to others. People were doing what they wanted to do while I felt helpless and unable to live my life fully because my body simply wouldn’t allow me.

What is your body feeling at those times when you’re helpless in need of rest?

One of the big issues of life with lupus is its unpredictable nature, meaning one day I can feel like my old self, and the next I just want to stay curled up in bed all day with extreme fatigue. It’s not like a sleepy or tired fatigue, but one of weakness. Like when you have the flu, and your whole body feels heavy and achy. I also get joint pain in my arms, wrists, hands, and legs accompanied by muscle aches. This discomfort and weakness has left me unable to walk at times. It can make my body feel so tired that I sometimes just want to cry at the thought of doing one more thing, or meeting one more obligation. I’ve also experienced nausea, GI issues, insomnia, and frequent migraines.

A flare can happen at any time and be brought on by a variety of triggers. It could be a busy weekend, eating certain foods, staying up too late too often, stress or long hours of work can eventually trigger a flare. Other times, it seems to happen for no apparent reason at all. It can be mild or severe, and it’s impossible to tell which it’s going to be from the outset of an attack.

As there is no current cure for Lupus how much medication are you required to take daily to maintain a healthy lifestyle?

Right now I take 16 pills a day including supplements to keep my immune system up. I take medications to manage joint and muscle pain associated with Lupus flare ups.

About six months after my initial Lupus diagnosis I was diagnosed with Fibromyalgia. I take medication for that as well.

How has your diet changed since your diagnosis?

A stricter diet has significantly added to our grocery bill. I eat raw and organic as much as possible with very limited amounts of processed foods.

How have people treated you since you were diagnosed?

At work, my coworkers have united in supporting me in every way possible. Being an elementary school teacher I have to walk my class to their encore classes, lunch, and recess. Teachers in my grade level have walked my class to and from these places, written sub plans when I couldn’t make it through a day, and my principal has even driven me home a number of times when I felt unable to walk.

I’ve really realized I have such an incredible support system. I know my family prays for me a lot, and checks up on me, and wants to know how I’m doing. Several months after I was diagnosed when you signed us all up for the lupus walk in D.C., that was a really big deal to me.

The love box. (A box full of goodies, homemade creations, and encouraging words Nadir and I put together each month.) Means so much to me.

How has it affected your marriage?

A few months after my diagnosis, Sean and I had the biggest disagreement we’ve ever had. I was frustrated as we discussed the delay in our plans of starting a family due to my illness. I was still processing my feelings and was angry that our plans had to change, but I didn’t realize I was taking it out on Sean until he said “I’m not the enemy here. Whatever you need, I’m here no matter what! We need to take care of you right now and worry about this later.”

He cooks and does a lot more housework since I’m not always physically able to handle it all anymore. He’s understanding, and encouraging when I’m feeling down or thinking it’s going to be this hard forever. He reminds me that “It’s just a bad day. We’re going to get through it and soon we’ll be celebrating a good day.” He also does a good job of communicating with me about my physical and emotional state. Because it’s an invisible illness, he can’t always tell if I’m trying to tough it out and so he always asks how I’m doing. 
He is helpful, often reminds me that he loves and supports me, has a positive attitude and his hobbies serve as an outlet that keeps him balanced which is good for both of us.

How do you feel it has affected your family and coworkers?

I think it’s made my family sad. I think it’s made my family feel helpless. But at the same time I think it’s also given my family the opportunity to love on me.
My coworkers feel helpless also, and it means alot to me when they offer to walk my kids to specials, or lunch. When they ask me how I am. For them to offer their support makes them feel like they can do something. Sometimes I don’t know what to tell my family I need. That’s why the love box is meaningful. Sometimes all I need is an encouraging word. Acknowledging that I look ok on the outside but not on the inside.
I take it one day at a time.

Nem and I also got a chance to chat about what she’s learned with Lupus, her future, and what she wishes people understood about her illness.

Stay tuned for that post coming soon!