20 Things One Lupus Patient Wants the World to Know

I Have Lupus But Lupus Doesn’t Have Me!

poster...stand strong

          I must confess, I haven’t always had this positive attitude.

          How can you have a great attitude about a chronic illness with no cure?

Something quite unexpected happened that has helped my attitude every day.

  1. WHAT CHANGED MY PERSPECTIVE

Twelve years ago, just after being diagnosed with Systemic Lupus, I was on a play date with our twin grandsons, then six years of age. You must know that I love being a grandma almost more than anything in life. And, because of that, I’m a hands-on grandma. I get right in there and play with the grands.

On this particular day, there wasn’t a cloud in the sky as we entered the playground. The boys were shouting about the different kinds of gym equipment they wanted to play on first.

Suddenly, it was as if someone had doused my eyes with chlorine bleach. It burned my like a finger in a fire. What was I going to do?

Finally, I told the boys I couldn’t play with them and scouted around for a shady place to sit and watch them.  All the while, I was planning a huge pity party,

I landed beneath a huge maple tree where many adults were sitting. Actually, the shade felt good even though my eyes were still burning.

Then, I heard a sound behind me.

Someone was singing…and singing….and singing.

Finally, I turned around and saw who this annoying singer was. He was a teen boy who was wheelchair bound.

He rocked as he sang, “God good, God good.”

Excuse me, I said, Are you singing God is good?

He smiled, kept rocking and singing.

How could he think God was good when he was confined to a wheel chair and couldn’t interact with others in the park.

Why wasn’t he angry about his physical limitations, like me?

At that moment, his uncle Ray woke up and said, “Yep, this is Isaac, and he’s singing God is good. He also has memorized several Psalms. MS is what keeps him in the wheelchair.”

How does he stay so positive? I asked the uncle.

Isaac has learned to focus on what he CAN do, not on what he CAN’T.

Right now, he’s probably thinking about horse-riding class in a few weeks.

Isaac’s focus on life has become mine. In fact, I call his thought “The Isaac Principle” It is my key for overcoming emotionally and spiritually for those with an invisible illness.

lupus symptoms

II. 20 THINGS ONE LUPUS PATIENTS WANTS THE WORLD TO KNOW

  1. I feel like I have the flu every day.
  2. I’m afraid others will judge me a hypochondriac.
  3. Sometimes I wonder if I am a hypochondriac.
  4. How can I trust what my body is telling me?
  5. How can I have a positive attitude about an invisible illness that has no cure?
  6. I feel selfish for practicing self-care.
  7. It’s incredibly challenging not to foster a victim mentality.
  8. If I try hard to look fine, I catapult myself deeper into denial.
  9. It’s easier at times to act fine rather than explaining why I don’t feel well.
  10. I hate the way Lupus has changed my physical appearance. People don’t even recognize me.
  11. I live in a constant state of alert, ready to deal with new symptoms, for Lupus can attack any organ of my body.
  12. My schedule is overflowing with doctor appointments and tests.
  13. If I say I have cancer, others say, “Can I bring a casserole?” If I say I have Lupus, others say, “You don’t look sick.”
  14. What I once loved isn’t good for me now, like the sun.
  15. I feel mad that healthy people take good health for granted.
  16. Sometimes, I long for a break, to be healthy again.
  17. Why should the burden of explaining Lupus fall on me?
  18. Others often minimize my illness.
  19. Others are surprised when I tell them I’m having chemo.
  20. New, unexpected symptoms often destroy my best laid plans.

III. What Others Can Do

  1. Remember the seriousness of the disease and don’t compare it to something in your life. Just listen.
  2. Reach out. What sounds good to eat? Can I bring dinner?
  3. Offer to drive to doctor appointments.
  4. Avoid offering miracle cures. Without a doubt, the patient has tried everything known to man.

lupus with ribbon

Close: You can be like Isaac was to me, teaching me to focus on what I CAN do and not on what I CANT. 

Story about a 9 year old boy whose mother took him to concert where a famous pianist was performing. A beautiful Steinway piano graced the stage, as people took their seats. When the boy and his mother found their seats, the mother turned around to talk to a friend in the row behind her.

Without a wink, the boy jumped over the seats in front of him, raced onto the stage, and sat down on the velvet covered Steinway bench and began playing chopsticks. They audience became irate. Who is that kid? How did he get up there? The maestro heard from backstage what was going on. He grabbed his tux coat with tails and ran onto the stage. He sat beside the boy and played an accompaniment to the boys chopsticks.

Lupus patients….like boy, vulnerable beyond belief, people not understanding his intentions

You….like Maestro, who is educated, come alongside through education, support, fudning.

Help Lupus patients play this tune:

I HAVE LUPUS BUT LUPUS DOESN’T HAVE ME.

 

 

 

2 comments to 20 Things One Lupus Patient Wants the World to Know

  • Judy Franks Taylor

    I was unaware whether or not you knew, but I almost was not able to graduate high school because I was diagnosed with Lupus in my senior year. I was also diagnosed with collagen’s disease and non-infectious hepatitis, at the same time. I almost lost my life at the height of the illnesses. I finished my last semester of civics through Texas Tech and was able to walk with our class at graduation. I couldn’t take steroids because of my liver involvement. I learned to appreciate life as a daily gift. The fact that I am still living is truly a miracle. I understand your pain and can appreciate living with daily symptoms. I am grateful you are involved in making this frustrating disease more understood.

    • Judy,
      Thank you so much for sharing your compelling story about Lupus. You have it much worse that me. I love your attitude and the fact that you are willing to speak about the realities so that others may be validated and helped.
      Sherrie

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