RA & Relationships: Finding Hope In Online RA Support Communities

Vanessa Collins Health Guide
  • In my previous life, before RA, I was a very busy person. I was involved in a lot of community activities. I had work friends, church friends, and online friends.

     

    The first thing I learned after I was diagnosed with RA is this: True friends are hard to find. I also learned that we need to maintain friendships. We need a support system.

     

    Mischelle, a close friend of mine, also has RA. Mischelle is an RN. She had to give up her career because of this disease. I asked her about how RA has affected her relationships.

     

    All of my friends are gone”, said Mischelle. I only have casual acquaintances now.”

    Add This Infographic to Your Website or Blog With This Code:

     

    RA is a disease the isolates you from friends and family. It's a difficult disease to understand because we don't look sick in most cases.”

     

    "These are the major factors that contributed to my loss of friends:

     

    1. Financial hardship - I fell out of the socioeconomic status my former friends and I shared. I couldn't go on frequent outings because I couldn't afford it.

    2. Mobility & Pain - I physically could not keep up with my friends anymore.

    3. Inability to make a commitment - I use to be the rock solid dependable one and now I can't even tell you if I can take a shower in the morning, much less get ready to go out with friends a week from today!

    4. Retirement - Having retired and now drawing social security disability, I'm not out in the public and I meet fewer people. Also, the majority of my friends were colleagues.

    5. Lack of Understanding - People mistake "can't" for "I don't want to". No amount of explaining can make people understand the nature of chronic disease unless they have lived it themselves.”

     

    Susan, another friend who happens to have RA, summed it up this way: “First of all, I lost my Aunt who raised me 20 years before my diagnosis. She had MS/Lupus.”

     

    I am lot like Mischelle, I lost my friends because I was fired from my big corporate world job June 2009. Now I am self-employed and work with my hubby.”

     

    My family really doesn't understand, even though my sister has Fibro. For the most part, I get that look. 'Here she goes again, talking about RA and how much she hurts.'

     

    My hubby has actually asked me one time, 'Why do you tell everyone you meet you have RA?' I talk to people about it because I like to educate people, and also I feel so bad that I can't function as quickly as others.”

     

    I got the same reactions from family members when I was going through infertility problems. So I just talk to you guys about it when I need. Thank you for being there for me.”

     

    Susan and Mischelle both point out an undeniable truth. We need a support system. We need friends. Unfortunately, we often lose our friends when we need them most. Our family members can also make us feel abandoned.

     

    Kathleen, an online RA community member, was surprised at the lack of support she received from friends and family.

     

    I try to think back on how i handled sick friends,” said Kathleen. “I guess I was just an odd person, because me and my husband have both taken food over to sick friends and once even made Thanksgiving dinner for a older friend that wouldn't have any dinner that day because they just weren't up to it.”

  •  

    Add This Infographic to Your Website or Blog With This Code:

    We've made chicken soup more times than I can remember for people. I just thought that's what you do for each other. Not once has anyone offered to make us dinner. When i was in the hospital, no one offered to make Glen dinner. My sister lives 4 miles from us. I guess i should have chose better friends.”

     

    Stephanie, a member of the same online support group as Susan, experienced the loss of her marriage as a result of her RA diagnosis. “Ironically I didn't really have friends before RA, only acquaintances, but after diagnosis people were surprisingly nice to me. My family were actually the meanest ones. Refusing to help me, saying I was obsessed with it and exaggerating how bad my situation was going to be. My mom is slowly starting to get it. My marriage ended because my ex was a complete ass about it and I couldn't put up with that.”

     

    These stories from my RA friends are unsettling. People w/chronic diseases often become isolated, and pre-RA friends don't seem to understand. That is not surprising, really, because many of our family members do not understand, either.

     

    Actually, a lot of medical professionals do not understand RA. That was particularly surprising and disappointing to me.

     

    The good news is this. We all have the opportunity to join an online support group. These online communities connect us with others who actually do “get it”.

     

    I have found understanding, knowledge, and true friendships within these support groups. My RA friends lift me up when I am struggling, and I certainly try to do the same for them.

     

    We are really more than just friends. We are family. Hope is a powerful emotion. When I share my life with my online support group friends, I find hope for the future, and hope for the humanity still present in so many of us.

     

    HealthCentral is a wonderful place to meet new friends. Many times these friends become family. What experiences have you had with your family and friends since your diagnosis?

Published On: November 27, 2012