Coping with the Stigma of RA
We have all worked with people who have required surgery to replace a knee or remove a body part that was no longer working as it should. We have worked with people who have been hospitalized with pneumonia. We have worked with people who have battled cancer.
What do all of these situations have in common? People are familiar with these types of life struggles. They are not familiar with the difficulties of living with an AI disease.
I was working for a financial services company when I was officially diagnosed with sero-negative RA. At that point in my life, I was just grateful for a diagnosis.
I had been feeling so unwell for so long. I nodded my head affirmatively when Dr. M said, "You have sero-negative RA." All I could think to say at the time was, "I know."
It was actually Lene Andersen who told me I had RA long before I was diagnosed. I am still thankful for her pushing me to find a good rheumatologist.
I had been dragging myself out of bed and to work every morning for months. When I came home after a day of sitting in front of the computer and talking on the phone to clients, I fell back on my couch and went to sleep. It wasn’t much of a life.
I really didn’t know what to expect from my co-workers when I shared my diagnosis with them. I do remember feeling overwhelmed and alone at their total lack of understanding.
Thankfully, my boss was kind to me. She didn’t understand why I had to get up and move around so frequently. Her boss was urging her to take away my "breaks" because I was up and down so much during the day.
We all know that sitting in front of a computer for hours causes great pain and stiffness for AI patients. I mentioned this to my rheumatologist. She was not happy.
Dr. M wrote a letter to the company I worked for stating that I needed to get up and walk around for 10 to 15minutes every half hour. That stopped the direct harassment, but it did not stop the undercurrent of resentment from my co-workers.
I have no proof of this, but I suspect they were complaining that I was up from my desk too much. I tried to educate the people I worked with about RA. I didn’t get very far.
There were a few people who were very encouraging and understanding. They were in the minority.
The woman who worked closest to me was especially angry about my intermittent FMLA. I used my FMLA time for doctors’ appointments. I used it for times when I just couldn’t get out of bed because of pain and stiffness.
When I would come to work late, or leave early, I received the silent treatment. I was not included in anything the other girls in my department did.
One day, I asked why they didn’t ask me if I wanted ice cream or a drink from Sonic. They would make afternoon runs for treats and not ask me to participate.
After I asked them directly, they changed their ways. I was included in the "treat days" from that time on. Still, I was uncomfortably aware of the resentment my co-workers felt toward me.
One day, my closest co-worker was especially aggravated by my absence earlier that day. She turned to me and said, "You just need to get over it. Everyone has aches and pains when they get older."
I didn’t quite know what to say. I am not a confrontational person. It was taking all of my energy and will power just to go to work every day. I was simply stunned.
I also remember my fellow employees complaining about people who were collecting disability payments. They seemed so angry.
I did speak up that time. I told them they should be feeling blessed not to have a disease that made it impossible to work.
I still do not understand why most of my coworkers were so unkind. I suppose they were unhappy people to begin with, but their comments were painful.
The stigma of RA is present whether a person has deformities or not. If you do not have deformities you are considered lazy. That is not a good thing to be, especially in our American society.
Many people shy away from a person with obvious deformities. They don’t know what to say. It makes them uncomfortable.
When I first started using my cane, I was either ignored, or asked when I would be better. When will we be better? Most people just do not understand that RA is a chronic illness.
I love the attitude of children. They look at my cane, and ask me what it is and why I have it. I explain that I need it to walk, and they are ready to move on.
They want to look at the "bling" on my cane. They want to know how to adjust it. They ask if they can try it out. Love them
As I look back on my journey with RA, I realize just how far I have come. I am no longer defensive about my RA.
For some reason, I was never angry about having RA. I was confused and a bit embarrassed because so many people just did not "get it".
I am not that way anymore. I am Vanessa Collins. I happen to have a chronic illness called RA.
How do you respond to people who are ignorant of your RA? Do you have any tips for someone who may be having a difficult time at work or with their family members?
Vanessa wrote for HealthCentral as a patient expert for Rheumatoid Arthritis (RA).