If you ask my dad about Lupus he will give you a very seemingly odd answer.  He will always say “Getting a grip on Lupus is like trying to tie up Jello with a string” Most people laugh, look confused, or even attempt to think of how one would even begin to tie up Jello with a string.  It’s one of those tricky ones.  Ya’ know the things that the “crazy old man in the movie says, that all of a sudden makes sense at the end of the movie and makes perfect sense.

I usually keep things strictly about me and my circle on this blog. Its a rule I made a long time ago so as not to upset friends and family by “outing” them for the world to see.  I was reading over some of my older blog posts today and I realized that I typically don’t write about my family. At this point some of these articles imply that I am an only child and It seems as though everything is sacrificed for me to survive and have a life. This is simply not true. I do have a brother, and and loving parents and a life that was full and loving and involved much more that lupus. I am grateful for every moment, just in this blog I happen to talk about the “sick” moments. That doesn’t mean the other happy fun filled moments didn’t happen, that just means I chose not to write about them.   My parents had dreams for me and all these had to be adjusted early in my life when they discovered I had Lupus. My father took it hard because it was not easy to fight what you can’t see.  Men want to fix things, but I wasn’t broken I just was different. After my mom noted that my knees were unusually hot, we went to the doctor. But those early doctors had no real idea what I had other than arthritis and that it was a mild case, nothing unusual.

After a long and winding road of various doctors visits, painful tests, misdiagnosis, sickness and painful days…it was after a visit to the Mayo Clinic that I had a definitive diagnosis and life changed. We learned to adjust, we became stronger as a family, and we just learned to do things differently. But most of all we became fighters.

Please don’t ask  my Dad about Lupus. He hates it. Venomously! He thinks that in his life it has busted him, twice. How can you fight something, or explain something that you can not see? When I was younger, I remember him working two jobs to pay the bills. My mother was working for a Catholic school and although she loved the people, the teachers and the community it obviously had the worst pay possibly for a teacher when teachers are already paid so little. Dad changed jobs or took new ones mainly for the money or medical benefits and eventually Mom changed jobs for a better medical and higher pay. We have missed once in a lifetime social events, vacations and, recently, lost communication with close family members; all because of Lupus or the lack of understanding about it. How much do we hate lupus?  I sometimes think we hate the lack of understanding more.

I suppose the great secret of the Lupus Life is that we are truly different. We see things differently, we cope differently and we plan our lives differently. I have. We adapt and we don’t even realize we are doing it. However strange as it sounds, many of my friends are almost on the same pain cycle as me. I am thinking of a particular “”spoonie sister” who goes on facebook to curse out Lupus to the world. When I see that shout out, it seems it is always on my bad day. I feel understood, I finally feel like someone “gets it” and for a brief moment I feel embraced by the family who does understand instead of morning the ones I might have lost along the way.  Empathy, Support and friendship is a beautiful thing.

So how does this all relate to asking my dad about Lupus?

My father, the one who hates lupus and hates even more how people don’t understand how it effects every day choices, and every little thing.

If you ask my dad about Lupus he will give you a very seemingly odd answer.  He will always say “Getting a grip on Lupus is like trying to tie up Jello with a string” 

While most people spend hours trying to figure out the riddle, we Lupus patients know different. We know that somethings just don’t have an answer.  Some days, the Jello wins. 🙂

How do you tie up Jello with a string? You just don’t. You accept that it can’t be done. Smile, tie a bow with the string and eat the jello. 🙂

Author: Christine Miserandino

Christine Miserandino is the founder of butyoudontlooksick.com. She has won numerous awards for her writing. She has been featured in newspapers, magazines and television. She was a guest expert for Alliance Health, LupusConnect.com and community TV host for WebMD.com. She prides herself on being a patient advocate, Online Influencer, and health brand ambassador but her favorite role is that of a mommy. You can find her at @bydls on twitter or on facebook.