When I was diagnosed with sero-negative rheumatoid arthritis I knew very little about the disease as a RN. I’d never heard of the sero-negative variety. It’s just not covered in RN school. I would dare say the average nurse thinks RA is a really bad form of old age arthritis because that’s what I thought and that’s what my nursing colleagues thought as they went with me on this diagnostic journey to find out what was wrong with me. I was reeling after diagnosis and was even more alarmed to find that RA is an autoimmune disorder and arthritis is just symptom of the disease process. The first thing I did was to start researching everything I could find on the subject using the internet. I found some really good informative stuff from reputable websites, but I wanted to know how people with RA felt about their diagnosis, the progression of the disease, and how their treatment plans were working. That is when I discovered online support groups for people with specific diseases.
The benefit in joining an online support group for me was that I did collect enough first hand accounts of the disease process, treatment plan, and problems encountered by RA patients that I saw some definite patterns emerge that were not always congruent with what modern medicine had to say about the illness. As my own symptoms progressed, I began to see that patients knew more about RA than many medical professionals. I also learned not all rheumatologists are created equal and there are some really gray areas on the map when it comes to diagnosing and treating RA. Back then, there wasn’t a such thing as the Rheumatoid Patient Foundation to give you the straight facts, but there was a woman trailblazing advocacy for RA patients, Kelly Young, at http://www.rawarrior.com. Through Kelly and other RA patients I learned much more about RA than I could have ever read in a book which assisted me greatly as I prepared to battle this disease.
As time has worn on, I have found that not all patient forums are the same. I do have to say that over a period of time these types of rooms can become toxic, especially the ones that use social media. You need to be aware of some signs of a poor fit for chat about RA and remember that RA patients generally don’t feel well and the human nature is such that a group of hurting people aren’t always that kind, can make prognosis seem dismal, can squash your hope, prey on you, and try to tear you down. For example, I found myself on the other end of being bullied today by a fellow RA patient in a social media site who disagreed with me on a topic and set about to squash the conversation through childish tactics. I messaged a room moderator to handle the problem and then it was addressed in a inappropriate, non professional manner, so I removed myself from that group membership. It wasn’t for me.
So, what is the new RA patient to do? If you can’t find a local support group that meets face-to-face, I would recommend you start with http://www.rawarrior.com and explore the archives. Also http://www.healthcentral.com/rheumatoid arthritis has some very good articles written by caring people with RA that can be a help to you. If you live in a rural area and can’t find a a face-to-face support group in your area I don’t want to leave you with the impression there are not any good online support groups out there. In fact I still have membership in a few internet support groups, but do enter these with caution. The Mayo Clinic published these guidelines* about internet support groups:
Be especially careful when you’re involved in Internet support groups:
- Keep in mind that online support groups are sometimes used to prey on vulnerable people.
- Be aware of the possibility that people may not be who they say they are, or may be trying to market a product or treatment.
- Be careful about revealing personal information, such as your full name, address or phone number.
- Don’t let Internet use lead to isolation from your in-person social network.
In addition, the Mayo Clinic published these red-flags* about support groups in general.
Not all support groups are a good match for you. Some may be driven by the interests of one or two members. Look for these red flags that may signal a problem with a support group:
- Promises of a sure cure for your disease or condition
- Meetings that are predominantly gripe sessions
- A group leader or member who urges you to stop medical treatment
- High fees to attend the group
- Pressure to purchase products or services
- Disruptive members
- Judgment of your decisions or actions
Living with RA is hard enough when most everyone around you thinks you look fine when you are so sick, which can be a driving force for you to seek out others with your condition. In this era where social media is so prevalent, it makes it even easier to turn to the internet for that support. The internet can be a little bit more brutal than the real world because people can say and do some really nasty things when hiding behind a computer screen that they wouldn’t do if you were face to face, but it’s not all bad. I was fortunate enough to find my best friend on a RA bulletin board. God was smiling on me that day because she and her husband have been such a blessing to me. The first hand knowledge I gained through other patient’s testaments, struggles and victories are more valuable to me than anything I could have read in a book or learned in a classroom.