Invisible Illness – My story
“Hard to explain to someone who has no clue. It’s a daily struggle being in pain or feeling sick on the inside while you look fine on the outside.”
I am sure many of you have seen them before. Posts that float around social networking sites such as Facebook, recognizing what it is like to live with an illness that others cannot see. Some people sympathize while others think you are just seeking attention or lazy. For those who are trying to understand, and for those who want to know that they are not alone, here is my story:
I admit it. I was lazy as a teenager. There were things that I was passionate about and would dedicate my time and energy to. But when it came to other things like cleaning my room or taking out the trash – who cares? It will still be there tomorrow if I don’t take care of it today.
I was lazy. But I was going somewhere in life. I was going to make good grades in college, get a good-paying job, a nice house and a BIG yard for my kids and animals to run and play!
Then, when I was 18, we were in a wreck on the way to my grandmother’s house for Christmas. My mother and I were injured but we survived and as the months went by we got better. The people in the truck that hit us appeared to be shaken, but otherwise fine.
6 months later, I still had a constant headache and my hands were weak at times. I remember using a spoon to pry the tabs up on canned soft drinks and randomly dropping things or finding myself unable to let loose. I took Tylenol in a desperate attempt to get rid of the headache, but even prescription-strength doses were not enough. So I gave in to the idea that I’ll have a few annoying problems. No big deal – I am still me. I can still go to college, get a good-paying job, fall in love with an amazing man, and buy a house with a big yard for our pets and children.
4 years later .. Starting to see that my plan will have to be modified. I have an amazing daughter, a family who loves me, 2 dogs, and I am getting good grades in college. But I am not able to maintain a large yard. I lose feeling in my hands if I even try. And some mornings my head hurts so bad that I literally cannot get out of bed. I realize that it’s time I slow down a bit.
6 more years go by. I had to give away my dogs and moved into an apartment. I am no longer able to work overtime. In fact, 40 hours a week was enough to make me practically collapse in pain when I got home. I slowly got so weak that I could not even wash my own hair or feed myself dinner. – Imagine how hard it is for someone who craves independence to sit there as their boyfriend feeds them spaghetti and oatmeal that have not been cooked to perfection.
12 years after my accident, I am finally finding a balance. The hardest part is knowing how lazy I look and feel. If I work 20 hours per week, sleep 10 hours at night, and take a two-hour nap and a couple of 15-minute naps every day – I feel great. I can help my daughter with homework, do crafts, and play fun games. I am almost the mom that I want to be. But 20 hours per week does not bring home enough money. So, I try for another balance. I work for 24 hours. I have a nap almost every day. I proudly watch my daughter’s karate lessons. And I reach exhaustion about twice a week.
You may look at me and see a big blob of lazy. But really, I am doing the best I can with what I have. Maybe someday the doctor will prescribe the right medicine. And maybe someday I will find a better work/life/sleep balance. Maybe then I will get better.
For now, I appreciate the people who accept me as I am. And I thank my doctor for trying. You really got close with that last one. The side effects were just too much.
2020 Update:
It has been almost 20 years since that wreck that led to my invisible illness. Things are improving slowly but steadily. I got a house with a yard and a doggy door. My daughter is almost grown. We have a dog, a cat, and a bearded dragon. I try to work 36 hours per week to afford these luxuries, but often find myself worn out at 28 hours.
God is Good. I pray that he will continue to help my health improve.