RA & Acceptance: Educating Friends and Family about RA

Vanessa Collins Health Guide
  • “I will give you $10,000 if you agree to call the wedding off,” said the middle-aged woman.  Her demeanor was serious.


    The prospective bride was stunned.  She was expecting a pleasant luncheon date with the woman soon to be her mother-in-law.  She quickly lost her appetite.


    Why was this young woman’s mother-in-law to be offering her money to stay away from her son?  The answer is simple.  It is also sad.  This young woman has RA.  She was “damaged goods” in the mind of the older woman.


    One of the biggest challenges I encountered after diagnosis was trying to get my family to understand.  My husband was wonderful.  He educated himself about autoimmune diseases.  He was a huge help to me.

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    My family was a different story.  My elderly folks live with us.  They have been with us for almost 18 years. 


    I have driven them to the hospital at three in the morning.  I have picked up groceries and prescriptions for them.  I have cooked for them. 


    I believe, because of their age, they had come to expect a lot more from me than I am now able to offer.  I expected them to automatically know this.  That was my mistake.


    Once I realized they were wound up in their own world of doctors’ visits and socializing with their elderly friends, I changed my strategy.  I explained, as best I could, what having RA means.  I explained to them about the fatigue.


    Now I tell them if I am not up to cooking.  Now they ask if I am able to do whatever it is they want or need.  That has made a huge difference.


    No more Thanksgiving dinners where my husband and I have to do all of the cooking and cleaning up afterward. Now they help.


    Such a simple thing as sitting the table is an immense help to me, and I appreciate it.  I let them know I appreciate it.


    One of the unfortunate things about living in a home with another couple is that you hear things that you wish you had never heard.  I still remember what was said about me, but I do not dwell on it. They didn’t understand.  They thought I was just being lazy.


    I had no such issues with anyone at church who really knew me.  A lot of my church friends have serious illnesses themselves. I think having a serious illness can make us more compassionate towards others dealing with pain and fatigue.


    That is not always the case, of course.  There was one gentleman that asked how I was from time to time.  I would either tell him I was having a good day, or just say, “Okay.”


    Invariably, he would start to tell me about the osteoarthritis in his hands, or his wife’s knee surgery.  This person is a kind man.  He just didn’t get it. He did not understand that RA is a systemic disease. He did not know that it can attack our internal organs. 


    I am happy to say that I have educated a lot of people about RA in our little community.  Most of those people are now clued in, and very kind.


    I love it when someone asks, “Are you having a good day?  You look great!”  I love that because they aren’t expecting me to be “normal” again.  They know I have good days and bad days. 


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    We live in a small community.  The closest town from where we live in the country has a population of 5500.  I like small towns.  People seem to have more time for you here.


    They don’t rush past, and brush you aside.  Instead, they speak to you, and if you are walking with a cane or not, they open the door for you.


    Sometimes it isn’t what ignorant people say that hurts.  Sometimes it is what they don’t say. 


    I remember going into work late because I was having a bad RA day.  One of my coworkers rolled her eyes when she thought I wasn’t looking.  That hurt.  But that is life. 


    If people don’t understand, or don’t want to understand, I have no time for them.  My energy is limited.  I choose to spend it with people who are kind and fun.


    I have read many times about RA patients being called useless by family and coworkers.  I have never experienced that particular slap in the face.  I can imagine the pain it must cause.


    I have a few friends who have done some really wonderful things for me.  I have had offers for rides to doctors’ appointments.  I have had people offer to pick up groceries for me.  I was stunned and felt very blessed.


    If I could roll the clock back, and start over again, I would not have wasted much time on those I so wanted to understand.  I wanted to be accepted by those individuals.


    I have learned that some people will never “get it”.  That is okay, because I have true friends in my life now. I don’t have time for hurt feelings and resentment.  I enjoy living way too much!


    What is the worst thing anyone has ever said to you regarding your autoimmune disease?  What  “miracle cures” have been pushed upon you?  How do you handle such situations?

Published On: June 26, 2014