Supporting the Rheuma
This week I had the pleasure of attending a YWASG meeting via Zoom. I had been looking forward to this YWASG (Young Womens Arthritis Support Group) meeting ever since I found out about them. At the end of the meeting I had said to the members of the group that ‘I had finally found my people!’
So I wanted to write an article about why it is so important when you have Rheumatoid Arthritis to find a support group. If you would like to join our Rheumatoid Arthritis support forum, you can join The Rheuma Mill’s Rheumatoid Arthritis Community here.
I want to outline for you today why it’s important to be a part of one and how to find the right one. You will be surprised at the number of Rheumatoid Arthritis support groups online. Unfortunately, not all Rheumatoid support groups are created equal. I want to go through what you need to be aware of when looking for an RA group.
Groupies get you
When I was first diagnosed with Rheumatoid Arthritis, I was in pretty bad shape. I had reached a point where I didn’t know what to do and how I was going to be able to continue to live with this disease. My life and body had changed so dramatically that I was in utter shock and fell into deep depression. Of course my friends and family were nice and showed me love but they had no clue as to how much pain I was in, both physically, emotionally and mentally. As I learnt soon after, only those with chronic illness will understand your chronic pain.
The Rheuma Mill was born!
That’s how The Rheuma Mill came about actually! I didn’t know anyone who had Rheumatoid Arthritis and I didn’t know who I could talk to about it so I decided to write about it. It was important for me to find a way to get all the thoughts out of my head, my feelings out of my body and just to feel lighter knowing that things weren’t bottled up.
I thought that if my words could make one person feel less alone and let them know that there is someone out there who can relate then it would all be worth it. I certainly didn’t expect that that one person would turn into thousands upon thousands. The Rheuma Mill has also been a Rheumatoid Arthritis support blog where I could share all the information and Rheumatoid Arthritis resources I had gathered and analysed from all the research that I had done and still continue to do.
There are many awesome things about the Rheumatoid Arthritis online community. You will find various groups online, particularly Facebook to share experiences with, gain knowledge and be able to ask any question you like. Have a question regarding joint replacement? No problems! Feel weird asking about how RA will affect your sex life? That’s okay too! Want to vent about your arthritis pain? Go for it! It’s really a great feeling to know that there are many people living with Rheumatoid Arthritis all around the world.
What you do have to be aware of with this online community is that you will find tens of thousands of people in the one group. This would be good in terms of the different types of experiences and answers to questions but this could in turn be extremely overwhelming. You might ask a question and be left with over a hundred different answers which is not always helpful. It’s also not uncommon to have heated discussions within a thread.
As with any group that you join, always be conscious of the rules in place. Some groups don’t allow the word ‘cure’ and some won’t allow links of any kind to be shared. There are also rules around posting photos, particularly graphic ones. Rules in regards to swearing are also common so be cautious of that as well.
The large groups are wonderful and even though there are thousands of members, you may find some more active than others. You will find some regularly active members who post every day about anything. This may be something worth keeping in mind because those sorts of things will clog up your news feed.
My journey is not your journey
Before joining any support group, it is really important to remember that every journey is different. Just because one person with Rheumatoid Arthritis experiences something doesn’t mean that you will. I say that because what you see and/or read in some support groups may be overwhelming and confronting. Particularly those of you who are newly diagnosed, seeing someone who is recovering from a knee replacement or reading about someone who will now need a wheelchair may cause you to get worried unnecessarily. What others are experiencing may well not happen to you.
Things to know
Another thing to keep in mind regarding support groups is asking about medication or medical type questions. Many groups frown upon this for good reasons. Generally speaking, all questions regarding medication should be directed towards your doctor. In saying that, asking about people’s experiences regarding pain management, treatment options and health care is okay.
It’s also important to join a support group that will cater to your condition. There are Juvenile Arthritis support groups, osteoarthritis support groups, psoriatic arthritis groups and RA support groups.
Seek and you shall find
To find Rheumatoid Arthritis support groups, you can go about that in a number of ways. Firstly and probably the most popular is Facebook. You can of course Google ‘ Rheumatoid Arthritis support group Facebook ‘ but the best way is to go straight to Facebook where you can search.
Another way is to go through the Rheumatoid Arthritis Foundation or Google ‘ Arthritis Foundation support groups ‘. They have a Rheumatoid Arthritis support network that will connect you with others living with RA.
Online support forums are fantastic but as I’ve discovered this week, nothing is as good as finding local support! YWAGS is Australian based and has a few groups operating around my state which is fantastic! I actually get to see and speak to those who live with Rheumatoid Arthritis just like me and I can’t tell you what a good feeling that is!
If you have a Rheumatologist visit coming up, make sure to ask your Rheumy ‘Do you know RA support groups near me?’. Before your Rheumatologist appointment, make sure you read my tips on getting the best out of your Rheumy appointment here.
Your Rheumy would be the best person to ask regarding local Rheumatoid Arthritis support groups. If all else fails you can always search for ‘ Rheumatoid Arthritis support groups near me’ on the internet. Although I don’t think a search for ‘ Rheumatoid Arthritis support group near me’ would be as fruitful as asking your Rheumy or even your doctor.
Local support groups are also perfect for those that prefer the smaller groups or more intimate connections. The Rheuma Mill’s group is very small and intimate in comparison to the others.
If support groups still aren’t your thing, please feel free to email me. There are many of you that prefer to chat to me privately and that is perfectly okay too! You can use the contact page or the email address is firstname.lastname@example.org.
The Rheuma Mall
The Rheuma Mill has an online shop called The Rheuma Mall that stocks a variety of things. All the profits from The Rheuma Mill is donated to Juvenile Arthritis.