async="src="/ Taking the Long Way Home: 8 Things I Want You to Understand About Living with Rheumatoid Arthritis

Tuesday, June 16, 2020

8 Things I Want You to Understand About Living with Rheumatoid Arthritis

This post was previously published on The Mighty. I have made updates to that original post.

I've been living with a diagnosis of rheumatoid arthritis (RA) for almost 4 years but looking back, I probably had RA for much longer than that. As an avid athlete, the physical changes associated with RA have been very difficult for me to deal with. I continue to attempt to keep up with my activities. I've learned to appreciate the good days and do what I can on the bad days. Sometimes, a day on the couch is the only activity I'm able to do.

What's been even more difficult for me is the lack of understanding and support from some of the people around me. Maybe if they knew more about RA and maybe if I had the opportunity to share some of the things I wish they knew about RA, they'd get it.

Here are 8 things I want people to understand about living with rheumatoid arthritis.




1. My disease is invisible. That means you can't see it. When I'm feeling well, I'm going to run, lift weights, waterski, kayak, cycle...and when I'm not feeling well, I'm going to try and I will make adaptations. Believe it or not, all this activity is good for me. Movement keeps my joints mobile.


2. RA is NOT your grandmother's arthritis, unless she has RA. RA is a progressive, systemic autoimmune disease that affects every organ in the body. RA should really be called rheumatoid disease.

3. I can be forgetful sometimes. Chronic inflammation, like that found in RA, can affect cognitive function. Researchers aren't completely sure why, but it probably has something to do with the elevated products of inflammation in the bloodstream. Hey, at least I have an excuse for being scattered!

4. Well-meaning people tell me that at least it's not cancer, but I can anticipate the likelihood of a shorter lifespan and the increased chance of developing cancer. I can also anticipate the possibility of becoming disabled as the disease attacks my joints.

5. Yes, I need those strong medications to keep my disease under control. No, I can't cure RA with food, vitamins, essential oils... and please don't tell me about someone you know who has. While diet, supplements, oils, etc haven't been proven to treat RA or provide symptom relief, I am willing to try things that may be helpful for symptom control.


6. While most people associate pain with RA, fatigue is the most common symptom of RA. I have to rest often and I may not be able to keep up with my activities the way I used to.  Rest days mean rest. I may even have to cancel plans when my disease unpredictably flares or when I've overdone it the day before.

7. I'm not faking it. Just because you saw me out running or maybe you saw me post an activity on social media doesn't mean I'm not having symptoms. Don't judge me. Staying active and positive is important to my mental health.

8. Slowing down and taking it easy is the hardest thing I've had to do. I've lived my life being able to tackle whatever I wanted. I've been described as tenacious, stubborn, and determined. I've run marathons. I became a mom after years of infertility. I became a nurse practitioner at age 45. This is the first obstacle life has thrown in my path that I haven't been able to defeat. But with everything else I've encountered in my life, I'm going push back as hard as I can. So far, so good.


Even though I first published this post over a year ago, it is more meaningful now than ever! I'm training for my first trail ultra. Trail running has been a godsend to this lifelong runner. I've been able to continue running and have the perfect excuse for slowing down. I know I'm fortunate to continue to be active. I was an athlete before I was diagnosed with RA. RA will not win!

As an athlete with rheumatoid arthritis, there are a few things I want you to understand /via @oldrunningmom #runchat #running #curearthritis #rheumatoidarthritis

What obstacles have you encountered that threatened your self-identity? What did you do to learn to live with it? 

I'm linking up with Kim and Zenaida for Tuesday Topics and with the Runners' Roundup: DebbieDeborahJenRachelSandra, and Lisa





36 comments :

  1. What a scary disease, Wendy.
    Point 8: I understand that so well. I would not like being forced to slow down, either. When you're used to achieving most of the goals you've set yourself, it must be difficult when a disease takes over.
    You're doing so well and I love it that you don't stop setting yourself ambitious goals!

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    1. Thank you! I'm not even scared of this 50k--so unlike me. I feel like I can do anything I set my mind to after all I've had to deal with the last couple of years.

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  2. Oh my goodness if anyone tried to pull #4 or #5 on me I would not handle it well. The hardest part for me would be dealing with fatigue, I feel like that's enough of a deal breaker without pain on top of that. You didn't chose RA but you chose the fight against it and you will win.

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    1. I can handle pain--I'm a runner, but the fatigue I experienced really threw me into a tailspin.

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  3. So can we talk about #7...I really hope that no one has ever said this to you because that's just downright mean. People need to understand that social media doesn't show all the ups and downs. I also think its a good thing that you show your running photos on Instagram. You never know if someone also struggling with RA sees those photos and finds inspiration in them.

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    1. So many people have said #7 to me--all I can do is smile and say, for sure... I just have to stay positive and I really think that pushing myself to maintain my fitness has helped a lot.

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  4. RA sucks but you are a warrior. Thanks for sharing this. I have a client whose wife has RA and this helps me understand a little better. You're an inspriation <3

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  5. I can't imagine what it's like to live with a chronic disease (and hope I never have to). I have others in my life that do, though.

    Mental attitude is so important with any challenge in life -- I'm sure your willingness to keep fighting has made a huge difference in your ability to deal with RA.

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    1. I'm fortunate to have been an athlete prior to my diagnosis. That gave me all the tools I needed to push through.

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  6. I've been reading your blog since before your diagnosis and I've never once thought you were faking your disease! It makes me angry for you to think you've been attacked from the outside by ignorant people. I've been blessed with very good health, but some of my loved ones have suffered and the comments of others makes a bad day so much worse.

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    1. It's been an interesting journey! I'll push through pain because I don't want to give in. But I've read accounts from other RA peeps that talk about wearing pajamas to their doctor appointments or not wearing makeup, just so their doctor believes them. How sad is that?

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  7. I love this post! One of my coworkers has RA, and I recently sent her a link to your blog. I hope she sends this blog to others so they can better understand RA! After my marathon in 2018, I was injured, so no longer "a runner". I learned to love cycling and went back to my first gym love-weight training! Now I am back to running (just finished Couch 25K last week), and missing cycling and weight training because I am not going back to my gym yet. Instead, I am running 3 days a week and doing PiYo the other 4 days! It's my "new normal", but it is working well!

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    1. So proud of you for getting back at it! I'm still doing my strength training at home. Even though my gym is open, I'm not ready to get back yet.

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  8. Wendy I have said it before but want to said it again - you continue to inspire me! I am always in awe of what you accomplish knowing that you are dealing with RA. It makes me really sad to think that someone has ever accused you of faking it...what the hell is wrong with people?!

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  9. I appreciate you sharing information about this. Its really something I didnt know about it until I started reading about it on your blog. I am sorry you have to deal with this, but you are doing awesome staying active and positive through all of this!

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  10. I honestly did not know much about RA until you started sharing some of your struggles and triumphs. I really appreciated your sharing your day to day challenges. I am so inspired by all that you accomplish and you really do show RA who is the boss!

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    1. The only things I knew were from my grandma who stoically suffered through RA. She wasn't active but she never complained. Back then, there weren't a lot of treatments.

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  11. RA sucks. Thankfully, I've only been an observer, but I have seen what it does to people. My brother-in-law has fought it for the better part of the past decade and is really at its mercy now. Keep on fighting!

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    1. I'm lucky to have a rheumatologist who is super aggressive with treatment. I have no doubt she's the reason I'm still able to run.

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  12. I remember the first time I read this post! I like your shirt. Nothing wrong with being slow. :-)

    Thanks for sharing this again with us. I love your attitude and everything you are doing to continue being active (when you can).

    Thank you for linking up with us!

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  13. My MIL has RA and I've seen the effects first hand. It's a terrible disease. But unlike you, she didn't stay active and so I think the disease got the better of her. My arthritis isn't nearly as severe as yours, but I do worry about it.

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    1. I feel like I'm doing really well--but I definitely feel the changes. Keep 'er moving....

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  14. I know how hard resting and slowing down is for you. And I know RA has really thrown you for a loop. But as I have said so many times: you have owned this disease, and not let it stop you. You should be so proud of your successes. <3

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    1. I sure am! And I'm so excited about my trail ultra. I might not be able to run fast anymore but I still can run far!

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  15. RA sounds tough but you consistently demonstrate that you are tougher! I am always in awe of both your strength and positive attitude.
    I really, really disdain it when people espouse pseudo-wellness BS like #5. Someone once told me that if I just ate Paleo, I would cure all the hormonal problems that contributed to irregular cycles, dysmenorrhea, and subfertility. Food isn't medicine. Medicine is medicine!

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    1. I'm so grateful for the science that has kept me moving. I also am grateful for all the adjuncts like supplements and nutrition that help too. It's all important. But we can't have one without the other.

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  16. I cringe when I think of the BS comments you've had to endure but I'm so proud of you for sticking to your guns and doing life on your own terms. That trail ultra will have nothing on you! <3

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    1. I think the whole slowing down, running on dirt thing is the way to go!

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  17. I'm really hoping these are random comments and no one has actually said "at least it's not cancer", or accused you of faking. Good %ucking grief!
    I don't know you, haven't meant you, but still know that you don't fake anything. You are an inspiration and I use you as an example for a good friend that has RA. (not in a "you need to be ore like this" way, more like sharing advise that you give regarding your RA, way)
    Hang in there Wendy!

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    1. Sadly I've heard that 'at least it's not cancer' comment many times! And while the word 'faking' wasn't actually used, comments alluded to it...people are really something, aren't they?

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