The other day I was having a conversation with a friend and she wanted to know how I was doing. I paused before I answered and considered giving her my honest response, but decided to keep it simple. I said I was fine.
She knew I was lying because my face told a different story.
When someone asks me how I’m doing, I get nervous when I have to answer. If I tell them how I truly feel, they might think I’m whining or complaining. Some people even think I exaggerate the amount of pain I’m in or that I’m looking for pity. I was even called a hypochondriac once because I had been in and out of the hospital every other week.
So, I give one or two word responses like “I’m okay” or “I’m fine” because I don’t want to be judged.
It’s so hard to find genuine, honest, caring people who can sympathize with what I’m going through.
It’s easy for someone to say “I’m praying for you” or “I’m here if you need me”, but when the time comes and I call on those individuals they never have the time to listen. They would rather sweep it under the rug and forget it’s there.
In my journey with speaking out about my conditions and the way they affect me, I’ve learned that most people like me want one thing: to be heard. To have the ability to tell their story and feel like someone is actually paying attention to what they’re saying.
I find that many people turn a blind eye to those who suffer. I don’t hear many people asking “How are you doing?” anymore. I don’t get many calls, emails or text messages from the people I once knew.
Since being medically terminated from my job, I’ve only heard from two or three people I used to work with. I dedicated ten years to my previous employer, met dozens of people and became very close to many of them. But since my condition has worsened this past year, only a handful have continued to be a part of my life.
I could say that it doesn’t bother me or that I don’t need anyone, but I would be lying to myself. It’s not attention I’m seeking.
I find that hearing other people talk about what’s going on in their lives allows me to escape my reality and feel normal. Finding a good support group is not easy for chronic pain sufferers because we’re viewed differently. People would rather avoid us entirely because they think our struggles bring negativity, but this is our life.
I would give anything to return to work and be an active mother who can play all day with her children without needing breaks or aching.
I can’t change the fact that I’m chronically ill, but others can change the way they treat people like me. I don’t expect anyone to fix me and I know sometimes it seems like there’s too much going on. But if an outsider who isn’t living with pain can’t handle hearing about it, just imagine what it’s like living through it on a daily basis.
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.