Growing up I was the only girl in a house with three children. My mom had hoped for a princess, but ended up with a tomboy. Even though I was small, I could take care of myself and took pride in knowing I could keep up with my brothers.
I started working at sixteen and moved out by the time I was seventeen.
Looking back, I can’t think of a time when I felt like I wasn’t in control of my life. I had friends to spare, I was happy, and there wasn’t anything I couldn’t do. I was strong and independent, there wasn’t any obstacle I couldn’t overcome.
Ten years later, my life has drastically changed. Some days I can’t get out of bed, buttoning a shirt takes forever, and I need help to do some of my basic daily activities.
I went from partying every Friday night to chemotherapy treatments on Fridays, and now my vomiting is not caused by alcohol consumption but side effects. I use to be able to bench press more than my own weight, and now carrying my three year old daughter is exhausting and sometimes impossible. I can’t go through a day without feeling helpless because of something I can no longer do.
I would have to compare the feeling with that of a multi-millionare who loses everything and ends up homeless and alone. It’s a shameful downward spiral over which you have no control. One minute you’re on top of the world and the next you’re struggling to stay afloat. You don’t have the strength to hold your head up high.
My pride in being independent has slowly diminished. What makes matters worse is that when I finally build up the courage to ask for help I’m met with people who feel like I’m burdening them. They feel obligated instead of inclined to help me when I ask for something as simple as opening a water bottle for me. They see it as being lazy as opposed to being sick. They’re so focused on themselves that they’ve forgotten all about paying it forward.
I often wonder if they would act that way if I was their mother, father or sibling. Help is something anyone can give and it doesn’t cost a dime. One day we’ll all reach an age in which we require aid from others. So why not do unto others as we would want done unto us?
There is a common misconception that a sick individual should be bedridden or in a wheelchair; that you’re not truly sick unless you look the part. But no two people are alike and just because your outside is normal doesn’t mean the interior is the same.
I may not look sick for various reasons. I smile, I laugh, and sometimes I can walk. What people don’t see are the moments where I’m in so much pain I wish my life would end.
I don’t regularly put my pride aside, so if I ask for help then I must really be in need.
I know there are people who fake an illness or disability for financial gain or selfish reasons, but a few bad seeds shouldn’t ruin a crop. We can’t allow those people to mold people’s perceptions of what the pain community is all about. Those of us who truly suffer need able bodies to help make our lives easier, even if it’s something as basic as holding a door open for us.
I want to feel like it’s okay to be who I’ve become, but the only way that can happen is with acceptance and an open mind by others.
Arlene Grau lives in Lakewood, California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.