Skip to Accessibility Tools Skip to Content Skip to Footer
A Top Ten about my RA

A Top Ten about my RA

So during this, Arthritis Awareness Month of May, I wanted to reflect on the top ten things I wish people knew about my RA. These are in no particular order and I could probably list 20, but we will stick to the “Top Ten”.

1)  I may not look sick, but please respect what I tell you about my ability to participate in certain activities.  RA is chaotic and brutal and though I may appear to be fine on the surface, understand that the pain and fatigue and discomfort can come on like a sudden thunderstorm.  So, don’t question my choices, or push me to do things that may compromise my health.

2)  Ask me if you can help or support me.  I hate to always have to ask.  There is nothing more wonderful than when a family member or friend anticipates what I might appreciate and JUST DOES IT.  Taking me to dinner, a movie, etc.  Offering to bring a meal over on a whim (I don’t cook anymore – see #7) is heaven on earth for me!

3) On the flip side of #2, I know what I can do after 20 years of managing RA, so please don’t always question my choices, suggesting something may not be good for me.  I have not lost my ability to think and consider.

4) Sleep can be elusive with RA.  That means I may have very low energy days and so let me set the pace.  Brain fog, often the result of poor sleep, may mean I am not as articulate or focused.

5)  Pain levels vary dramatically as does my ability to cope with it.  Some days I may need to just rest and not do anything.  Trust my choice.

6) Exercise is crucial but needs to be tailored to the activity of my RA at any given time.  One day, when my knees and hips and feet are at peace, walking may be perfect!  Another time when they are not so compliant, simply doing some light water activity may be best.  Let me set the tone for exercise.

7) I cannot cook anymore!  Some of us with RA can and will, but for me, it brings on hand and finger discomfort that lasts for weeks, if not months.

8)  I am still the same person with the same qualities I had before RA.  If anything, RA has deepened my appreciation for the simple joys of life, from enjoying the view of a sunset with my husband from our back porch, to relishing every moment spent with my family and friends.

9) I will get sad.  I consider myself a very upbeat and strong person.  That said, there are times when I feel sad or depressed thanks to RA.  When these feelings hit, I need others to understand that and offer to listen and comfort me during those times.

10) RA does not define me but it does require my attention to manage it.  By doing that I will be a healthier and more contented person with many years of life left to live!

So there you have it.  My Top Ten.  What are yours?

Nan

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • MaryMW
    3 years ago

    Once again another great article hitting the spot. The hardest one for me is definitely people telling me what I should do. Or having only one of my “friends ” from work call after I went on medical leave. Just people in general, I told my rheumatologist to tell her other patients about this site, because it is a huge help to find other people going through the same thing. Thank you for another great article.

  • Nan Hart moderator author
    3 years ago

    Mary you are so welcome. If you want to be proactive, you could print out a few of your favorite articles and give them to you Rheumatologist. I did that and they copied a bunch and have them in the waiting room! Anytime I can share with others it helps all of us! Best, Nan

  • Sonia
    3 years ago

    Nan, your article is dead on target – this is exactly how I feel. I wish so much to be able to say these things to my own family and I feel so guilty knowing that my husband is working going to school my son is going to school and working I just wish they’d just take care of keeping the parts of their house clean so I don’t have to look at the mess all day, it’s hard for me to ask as well. Now, I do not have the use of either of my shoulders thanks to OA, but my family (husband and son – 2 able-bodied men) can’t keep up with the same things I used to do around the house all the time, now my house looks like crap and everything is falling apart. Unfortunately I don’t have any family members that ask if I need anything or help. I envy that you have mastered your RA. I struggle physically and emotionally every single day.

  • Nan Hart moderator author
    3 years ago

    Sonia I know so well what you are talking about! It took many years and many tears to get to where I could ask and believe me I am STILL not great at it. Print this out and ask them to read it or put it on the fridge! That may launch a discussion that will bring you some much needed assistance and them a clearer understanding of RA and OA and how it impacts you. Best, Nan

  • Nan Hart moderator author
    3 years ago

    f5wpkp I am happy to hear that this article resonated with you. I do know what you mean about the isolation that can result. One suggestion is to look into launching or participating in an RA Support Group. I started one here about 5 years ago and the fellowship and comradery and support we all enjoy far exceeded my expectations. All the best!. Nan

  • Lauren Tucker moderator
    3 years ago

    Hi f5wpkp,
    Thanks so much for your comment. We are glad you liked this article. You certainly are not alone in feeling the way you do, there are many others in our community that understand.

    If we can ever provide you with support, information or feedback, please don’t hesitate to reach out. We are here for you!

    Thank you for being part of our community.
    Best,
    Lauren (Community Manager RheumatoidArthritis.net)

  • f5wpkp
    3 years ago

    This is a great article in dead on. I have multiple overlapping autoimmune disease is but every single one of these hit home for me. One thing I would add would be how isolating having an invisible illness could be. Once you say no you cant attend certain events because of how much pain you’re in, people slowly stop inviting you, I just assume you’re going to decline so then don’t even bother inviting you and that’s really hurtful. I don’t choose to be crippled and riddled with pain every inch of my body. It’s hard to sit back especially with social media and see your friends out having a good time without you cover when you kill a be normal

  • Poll