(Editor’s Note: National Pain Report welcome Arlene Grau as our newest columnist. Arlene is a young mother who suffers from fibromyalgia, rheumatoid arthritis, lupus and several other diseases. She will be writing about the social aspects of chronic pain, and how pain sufferers and their diseases are often misunderstood.)
We all have friendships we cherish and treasure. People we know we can count on and trust — no matter what.
But what happens when your friendship or family bonds are put through one of the most difficult tests there is? Why do some relationships survive while others quickly fade away?
This past year I realized who was really there for me unconditionally and who wasn’t. I lost many friendships and relationships, while at the same time I made new connections and strengthened ties with family members and people I considered acquaintances.
It’s unfortunate that there are people in this world who aren’t willing to learn or educate themselves about your pain. Instead they find it easier to simply walk away or ignore what you’re going through. They assume you’re faking it or exaggerating, because you look normal on the outside. They get angry when you turn down an invitation to hang out or go somewhere because of your pain. They don’t understand how you can go from feeling fine one day to being completely disabled the next.
I used to put my body through hell rather than to turn down an invitation to hang out with others because I felt like that was my only option. I didn’t want my friends or family members to get upset, so I hid my pain and pretended to be “normal” in order to please them. Sometimes I would go out and end up in the hospital the very next day. All the while, the people who I thought were supposedly my friends or close family members never cared to visit or call me when I had to spend numerous nights alone hospitalized.
I often felt as if no one understood what I was going through, how my diseases took a toll on my body and state of mind, and how all I wanted was for someone to take the time to hear me out and stop judging me. Little by little friendships ended, bonds were broken, and my support group grew smaller and smaller.
I went through a state of depression that I wouldn’t wish on my worst enemy. I hated life, felt hopeless, and wanted to give up numerous times.
Thankfully, God graced me with an incredible mother who refused to let me give up and an even more amazing husband who helped me get through my roughest days. I learned that if certain people didn’t care enough to understand what I was dealing with then they really didn’t care about me.
Letting go of the negative and selfish individuals in my life became a healing process. If I was going to fight this pain, then I was going to need the toughest support system I could find.
I’m pleased to say that now I’m not afraid to turn down an invitation. M friends and family all know that nothing is ever definite when it comes to me. I will RSVP for an event or gathering but everyone knows there’s always a possibility that I won’t make it. I have friends who ask me to explain what my auto-immune diseases are and later Google or research them on their own. My mom has read several books and articles about what I should and shouldn’t be eating. She and my mother in law always take my special diet into consideration when we get together.
My support group has seen many people come and go but now it’s stronger than ever. Now when I have to spend time in the hospital for pain management and flares, the people in my support group all help out anyway that they can. Often I ask people not to visit me because I’m so heavily medicated that there really is no point. I don’t feel the need to sugar coat what I say to them.
My oldest brother Abraham and kid sister Damaris often fight over who’s going to spend the night with me at the hospital. My parents never listen to me and come anyway, which I value because it makes me feel that much more loved.
For some it may sound like a sad story that I spend most of my time hospitalized or being treated for my constant pain and flares but to me it’s what “normal” is. I always tell others not to pity or feel sorry for me because it does me no good. All I want is to be understood instead of judged.
We all need a strong support system in our lives. Whether you’re ill or not, the people you surround yourself with can make a big impact and help you overcome any obstacle.
The first step in creating yours is weeding out the negative, judgmental individuals who will only bring you down. Find people who are willing to learn about your condition and what your daily struggles are. Then and only then will you feel like someone truly understands you!
Arlene Grau lives in Lakewood, California with her family. 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.