Living with Lupus

From a FaceBook post dated February 2, 2019

Living with Lupus is not my most favorite thing in the world. It’s exhausting, it’s unpredictable, and, oh yeah, it’s painful. But I’m not unique. Many people deal with chronic conditions day in and day out. How can you help me or another friend with a chronic illness? Here’s five thoughts.

• Keep giving me hugs and pats on the back (gentle ones). They may hurt me, but I truly believe human touch is healing.
  
  
•  Ask me how I am, but just know I may say “fine” when I’m really not. Many people with chronic conditions are afraid their friends will see them as complainers and whiners

Don't make assumptions...

• If you’re curious about something, ask? I’m not afraid of questions. I’ve lived with this condition a long time. Unfortunately I know a lot about it. Sometimes people just make assumptions about me instead of asking and that hurts. For instance, I use a wheelchair at school. Many people don’t know why I have it when they also see me walking around most days. Well the answer is, most days I am okay, but I never know when my lupus will strike as evidenced by this week’s flare. When that happens, I can go from a girl full of energy to one that can hardly stand in less than 24 hours. Just because I feel bad, doesn’t mean I can stop working, and on those bad days, that wheelchair is a life saver.
  
  

• If you know I’m having a bad day (or days) don’t be afraid to just jump in and help. Most people with chronic issues hate asking for help even when we need it because again we don’t want our friends to think we’re whiny helpless people. My friends at work are amazing at this. When I’m having a bad day and they know it, they do things like showing up at my duty. They say, “I’ve got this covered, go rest for a few minutes.” You have no idea how that kind of love in action speaks to my heart.
  ​
• Finally, please pray for me. There is no way I could battle this disease day in and day out without God standing beside me and sustaining me. My reliance on God gives me the strength and courage I need to keeping fighting each day. When you’re battling a disease that will never go away, will never be cured it’s easy to become lost in despair. But I know my hope and strength are found in the Lord. Psalms 30:5 promises me that “....Joy comes in the morning.”

I know there are other things that could be added to the list. But these were just some quick thoughts I had this morning while I’m laying in bed battling with my Lupus. Btw, it’s a battle I’m determined to win.