Please Don’t Ask My Dad About Lupus! The Answer Might Involve Jello.

 

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.

Jello with a spoon

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. 

 

©2017butyoudontlooksick.com
  • Christine Miserandino

    Aw patty. So nice to “meet” you!!! Dad always speaks so highly of you!

  • Gail Hedlund

    Yes. It is their loss. My family doesn’t get my illness. I’ve given up trying to make them understand. They figure if it’s not visible that it’s all in my head. In reality, it’s in my joints. Thankfully I have a few family members who battle invisible illnesses as well….we are each others support. Know that you are not alone!!

  • Sylv Taylor

    The willingness of family to believe the worst about you, instead of feeling compassion, is something I don’t understand. It’s already demoralising to be sick all the time, why do loved ones have to turn against you?

    I just had to accept that ultimately it wasn’t about me, and it’s their loss if they don’t want me in their life. It still hurts, but the lack of bitching about my ‘laziness’ more than makes up for it.

  • Josie

    I understand the father thing. I’m in the process of college applications, and one of the things I’m having to keep in mind is where I live so that my EDS doesn’t keep me from getting to class. My dad’s alma mater is my top choice, and he wants me to go there but he knows it’s not easy for people who are handicapped to get around there. I can tell he wants to fix it, to point out the perfect dorm for me and say “I’ve found it!”, to find a pair or crutches I can stand for a 20 minute walk, but he can’t make the impossible possible. It’s hard for all of us right now.

  • Patty

    I was lucky enough to meet your father last summer when we were both employed at Boy Scout camp. I happened to mention to him that I had fibromyalgia and he told me his daughter was the spoon girl. I felt like I was in the presence of a star. I took myself to camp to test myself and push myself beyond my limits. I kept to myself pretty much until the conversation with your dad. He was a gift to me. Someone who understood. When I was first diagnosed and trying to get people to understand my illness and limits I used the spoon theory and there was your dad in my path when I was challenging my illness. He is proudly spreading your message and helping people as you are! Thank you and a big thank you to your dad too.

  • Tony Turtle

    Or you keep the jello in the pot and tie it up – that’s arthritis talking – is there a lift instead of an escalator or stairs? Still, it’s a great analogy.

  • lee

    I think it is great you can talk about Lupus. I am 46 my dad passed away from this when he was 27 years old. So even though I do not have it. I do understand somethings about it. I am very careful of the sun. When ever We go to a beach,Family outing or amusement park. I make sure my son and I are very protected by wearing Hats and appling plenty of sunscreen through out the time we are in the sun.You would think by now they would have some kind of cure for this disease,

  • ashabutterflys

    What a wonderful article. Your dad is such a sweet man and I am thankful that I meet you both last week. I might not have Lupus but I understand all to well.

  • Sharon T.

    Very well stated! Great article!

  • Risovic

    O moj gosh! I love your dad! 😀

  • Christine Miserandino

    I am slowly coming back… writing as much as I can, as I gather up my spoons. BUt you will be hearing from me a lot more. I promise! 🙂 #spoonie

  • LaBleuEyes Cynowa

    I want to thank you from myheart for posting this. As an MS Transverse myelitis patient this is all too familiar. And as you noted sometimes just knowing SOMEONE UNDERSTANDS, gets me through the darkest moments.

  • lisa

    marvelous! I’ll be using your Dad’s answer

  • Christina Haines

    Thank you!!!! I love your Dad’s explanation! You are so right about doing things differently…I want to thank you for sharing your story I find that you and our fellow spoonie sister keep me going. You both are an inspiration!(((Hugs)))