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How do I help friends and family understand my RA

Hi everyone,

I am a busy mom of 3 and wife. My family depends on me for a lot (what Mom and wife doesn’t feel this way, huh?) My recent flare (which was the worst I have ever experienced left me at times unable to function). How do I explain this to my family so they will understand? My family saw me in tears because of my pain and for my kids and husband it was distressing. I have never been one to depend on others. How do I explain to them that I cannot do things at times. Also, how do I tell myself to let go and not feel guilty about asking my family for help?

Thank you 🙏

  1. First, I want to say that it’s near impossible for anyone who doesn’t have RA to understand what it’s like to live with it. I have had significant others and even a spouse leave because they said they were prepared for anything but when it actually happened, well, they weren’t. I tell you this to help you cope with the fact that you’ll probably have to cut them slack. A ton of it. Even after 30 plus years my mom still doesn’t fully understand some of the aspects of my RA. In addition asking for help is one of the most difficult things you’ll ever have to learn how to do. I was super independent for years even with the RA and now I have to ask for help on a regular basis. It stinks at first, I won’t lie, but it does get easier and remember - they are your family. I’m sure you have done a ton of things for them as well. Either way, remember, you are not alone. We are also here to help however we can. Keep on keepin’ on, DPM

    1. You are 100 percent correct. Nobody without RA can understand what we deal with. Unfortunately RA is a lonely journey. I was diagnosed 7 years ago and although my wife is compassionate she just doesn't realize at times what I am dealing with. The best we can do is to reach out to those who DO understand and take advantage of the support that we have and not sweat it when people don't understand and try to help each other along the way. Thanks to you and the others who are involved with the support group here. God Bless.

    2. I get it, you are totally right. It is hard and to be honest, as I said, I lost a spouse and recently a girlfriends because it was just too much for them to deal with, even though I explained in detail what will be in store. The best I can come up with is that when it gets bad is just to either tell the person I need time to myself, os just to ask them to be with me and that’s enough. Fortunately we have places like this and support groups where we can vent and chat with others who really get it! Just know you are never alone!! Keep on keepin’ on, DPM

  2. Thank you Daniel!

    1. Dear Kim,

      This is such a quandary for all of us. It wasn't until I was forced to go on short-term disability that my sons realized how difficult it was for me. During that time I came to understand that people want to help, they just don't know how. So they don't. I learned to become specific in my requests.
      You may want to sit down with your husband and set up a contingency plan for flares. Have him scribe the lists of things you will need help with during a flare in the home.
      Rally your girlfriends or faith community to chauffer your children to school and activities. When you feel better, double your meals for a week and freeze the extras for easy meals when you have a flare.
      I always feel good when I can help someone. Therefore, I remind myself during a flare that by allowing others to help, they receive a blessing.
      Most of all, be honest with your children. Tell them you are having a flare up of your illness, but it will get better.
      Work with your rheumatologist to have meds on hand for a flare, so that you can attack it right away.

      Blessings on your journey,
      Mary Sophia, moderator

      1. Thank you for the wonderful advice Mary❤️

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