“But you don’t look sick” is something I hear often. I used to hate it when people said this. Because inside I was hurting so bad I wanted to scream. It was as if people didn’t believe how sick I was.
As I get older I’ve learned not to be so easily offended.
I don’t talk about my lupus to get sympathy or pity. I only do it to help others not feel alone or to help someone understand why I might look perfectly normal on the outside, but inside I feel like I’m dead or dying. All the time.
In fact, it took many years to talk about my lupus at all outside my family and close friends. At first, I didn’t know enough about the disease to explain it well. Some people thought it was contagious. I at least knew enough to assure them that they couldn’t catch it from me.
When I began to share my story and explain to friends and coworkers why I couldn’t go to the beach with them, or out with the girls every week, their pity turned to annoyance.
As my disease progressed, I became extremely sensitive to the sun, temperature changes, fluorescent lighting, and I contracted colds and flu easily. I took refuge in my home, away from these things that made my body attack itself. In doing so, my friends withdrew from me and I swirled into a deep, dark depression.
The depression was made worse when my doctors discovered I was resistant to all medications available (both natural and man-made), and then even more so by the death of my mother from complications from her own lupus.
Ignoring the disease didn’t help, and neither did feeling sorry for myself or joining lupus groups. All of it just depressed me further.
After hitting that low and slowly bouncing back I learned that I needed to change my mindset about myself and my lupus.
I realized that although I would need to modify my lifestyle to help minimize my lupus symptoms, it didn’t mean I couldn’t have happiness or success. Just because I had to organize and live differently than other people, I didn’t have to give up on my dreams and goals.
I decided my life would not be controlled completely by my lupus. More importantly, I would not be defined by my lupus.
I attacked my daily schedule as I would do research for a court case. I scrutinized everything I had to do during the day, week, or year. This was mostly household chores, daytime work, and shopping and cleaning to keep the house and vehicles in good shape.
Then I looked at what I wanted to do. These activities included writing, reading, exercising, socializing, gardening, passion projects, and travel.
I then had to decide what I was actually capable of doing each day or week. And what were priorities. There are some days I can’t get out of bed or walk, and some days I have brain fog or vertigo so bad I can’t drive myself to work. So I did have to realize that if I spent a day in the garden, for example, the next day would need to be one of rest.
And I needed to forgive myself for not being able to do it all. That realization and self-forgiveness took a while, but I’m much better at it these days.
- Fluorescent lighting is bad. Two hours under fluorescent lights are like being in direct sun for one hour. So we retrofitted our house with LEDs. I also quit my full-time job and took a part-time job that was willing to change their lighting to LEDs.
- Direct sunshine. I love to travel or hike in the mountains, so I stick to the shade and wear sunscreen and special clothing to protect from UV rays.
- Exhaustion. I go to bed early since by dinnertime I’m exhausted, and I rarely do anything outside of my house in the evening.
- Diet and exercise. It’s important that I carefully balance my diet and exercise to keep flares at bay. Too healthy of food and my body attacks itself, too unhealthy and I get sick. Same with exercise. It’s a never-ending battle for the middle ground.
- Consistent medical care. I allow my doctors to keep a close eye on me. With as many specialists as I have, this means I see someone every month.
- Routine. I love spontaneous fun quite often, but I need fairly consistent morning and evening routines to make sure I have everything I need close by and ready. This alleviates stress and anxiety, especially in the mornings when I’m trying to get ready for the day.
- People are full of germs. I now wear masks in most public places, especially when traveling.
- Shopping is exhausting and full of germs! My husband does most of our shopping so I can avoid coming into contact with illness and fluorescent lighting on a weekly basis. It’s amazing how most people think if you use hand sanitizing wipes that everything will be all right. They don’t remember from grade school science that germs are airborne and sneezes and coughs have quite a high rate of speed.
So, yes, I do have to modify my lifestyle. But now that I’ve got routines and lifestyle modifications in place, I can concentrate on what matters most to me. I’m not constantly worrying about my pain levels or kidney levels or how I’m going to get dressed in the morning.
I have peace that I’ve done all I can do for myself. Whether or not I can walk or shower that morning, I have choices and routines to fall back on.
This new mindset gives way to more positive thoughts. In response, my body, my daily efficiencies, and ultimately my successes have responded tenfold.
But there are always going to be setbacks with any autoimmune disease. Especially when you’re a type-A personality going full steam ahead toward your goals and then something like your kidneys failing put a halt on your carefully laid plans. This can be quite a dent in your motivation.
What do you do then? Quit? But then you’re letting the disease control you again, instead of you controlling your disease. No, we must keep going because the alternative is not acceptable. When we keep going, keep succeeding and celebrating those successes, we win. Not our disease.
Frustration and depression are common with invisible illnesses or disabilities, but we must find our own ways to work through these times and keep going. Don’t give up goals just because you have to do things differently or slower than others in your field of passion.
I might never work for NASA, or even work full-time again outside my home, but I can travel and I can write. And I can play with my grandbabies (and then take a nap!). These things are important to me and I make sure to find ways to do them with joy and happiness and protect my health at the same time.
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”– Khalil Gibran