Sharing Rheumas with friends
Fellow rheumatoid arthritis sufferers often ask me to help them with explaining rheumatoid arthritis to friends. It is just as difficult, and sometimes more so, to explain RA to family. There are many women with RA who complain to me that their husband doesn t understand rheumatoid arthritis. They are not alone!
Rheumatoid arthritis is an invisible illness so you often don’t look sick and there is no rheumatoid arthritis smell. This makes it hard for our loved ones to see what we battle.
It may be that cancelled lunch date or appearing lazy. Either way, questions often arise and frustrations boil over.
In this article, I am going to give you tips on educating your loved ones about living with rheumatoid arthritis.
All these questions!
Why are you always so tired?
When are we going to go out to a movie?
What is rheumatoid arthritis?
What is rheumatoid arthritis caused by?
How is rheumatoid arthritis diagnosed?
Who prescribed you all those meds?
These questions probably sound familiar. I know many people who don’t even bother answering the questions anymore. But it doesn’t have to be this way.
In explaining rheumatoid arthritis to friends, 5 main things need to be covered. The What, When, Who, Why and the How.
Had you heard of rheumatoid arthritis before your diagnosis? I hadn’t and chances are, neither have your friends. So you have to educate them but keep it simple. Focus on what RA is rather than what it isn’t and avoid using more words that you’d then have to explain. Another tip I give to my readers is not to dispel any myths unless you really have to. Less is more.
The main problem with explaining rheumatoid arthritis to friends, is the word ‘arthritis’. People know about arthritis. There is a very valid school of thought that we should be calling it ‘rheumatoid disease‘, it is after all an auto-immune disease. When we use the term ‘arthritis’, people refer to the arthritis that their grandparents have and think it’s all joint related. By eliminating the term ‘arthritis’, you have largely solved half the problem.
This is what I like to say: ‘I have rheumatoid disease. It’s an auto-immune disease that causes inflammation in my joints which causes me intense pain. It also causes inflammation in my central nervous system which causes me extreme fatigue. There is no known cause or cure.’
It may seem obvious but the most ideal time to explain rheumatoid arthritis to friends and family is when everyone is calm and open to listen. Many of my readers confess to me that they often try to talk about their RA with a loved one when they are in the middle of a flare or an argument. Not only does this not help your flare but it won’t help your loved ones understand. Good communication or empathy does not happen when you are angry or frustrated. Choose a good time.
I explained my diagnosis through a Facebook post. Yes, I know but don’t judge me! – I am only friends with my real friends and family on Facebook. This was a great move for many reasons:
- I shared my diagnosis with multiple people at once. – There is nothing worse than having to repeat yourself over and over.
- Expressed everything I needed to say. – You can re-read, edit and add to get your main message across.
- People can choose to react or not react to your news.
- Gives your friends and family an opportunity to do their own research.
- All in good time. – It gave my friends and family control over when to read and the time they needed to absorb and process my words.
Of course you don’t have to do it via Facebook like I did. You may decide to write a letter for loved ones to read or for you to read to them. If you need help constructing your words, you can download my free sample letter here.
My advice to you would be to only tell those that really need to know. Your immediate family, close friends who you see regularly, your colleagues and your employer. Focus on those that will be understanding and able to support you and help you when you need it.
Limiting your diagnosis to your nearest and dearest will also limit the amount of unsolicited advice you get. Unfortunately, you can’t avoid unsolicited advice about what you should be doing and what not to do with rheumatoid arthritis. But limiting the number of people you tell will help with this.
It’s important to not only explain what your condition is but why things have changed for you.
Why aren’t you trying?
Why do you have to take all these meds?
Again, I would keep this simple and not over-complicate things. I tend to avoid using names of medication and describing the pain. The fact of the matter is, you really can’t explain the pain factor. Only those with rheumatoid arthritis will understand the severity. You can join our Facebook community to get support from others with chronic illness who know first hand what RA pain feels like. We will understand the rheumatoid arthritis good days bad days.
Explaining medication will only lead to more questions. I don’t think loved ones will benefit from knowing that methotrexate is a cancer drug or that you love prednisone.
I say something along the lines of: ‘The pain and fatigue that rheumatoid disease causes me is indescribable. The debilitating nature of the condition prevents me from doing the most basic of tasks. I have been prescribed a number of treatments from my rheumatoid arthritis doctors to prevent permanent damage to my joints. My treatment is complex and have side effects. My disease also puts me at risk of having other illnesses.’
Surprisingly, one of the questions we find hardest to answer is ‘how can I help you?’
It is really hard to see someone you care about in pain and it’s confusing to see such a radical change in someone you know really well. There is a period of adjustment for everyone.
It was important to me to tell my loved ones that I will have Rheumatoid arthritis long-term so I need them to be patient. I need time to heal, to grieve and often, I just need to be on my own. I also let them know that the ultimate rheumatoid arthritis must haves is understanding and someone to LISTEN. The pain and frustration is endless. If I can’t express it, I compromise my mental health which then exacerbates my symptoms.
That is what I need. It may be different to what you need. Be specific with what you need from your friends and family. Break it down for them, let them know what you consider to be a help and what you consider a hindrance. Don’t be afraid to ask for help even if it’s physical help.
Another thing to remember is that you don’t have to justify or explain yourself to anyone. If you’re being called lazy, it’s not through lack of trying. You know that. The person who is calling you that is frustrated and lacks understanding. That is not on you. Be assertive, say ‘no’ when you need to and don’t feel guilty. You battle a chronic illness every single day and that is enough. For everything else, you got your RA family.
We got you.
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If you love someone with RA, you need to read this!