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The Occasional Champion

I was recently out with some older friends who I don’t see very often. As we were saying our goodbyes, one of them asked me how my rheumatoid arthritis was doing. I told her that it hasn’t been great, and that I’ve had to increase the medications I’m on. Then her husband, someone who I really like a lot, said, “Have you heard about Borax? I read that you can take boric acid and it will cure arthritis.” Ugh. I felt that pit in my stomach that I often get when feeling the divide between those of us contending with autoimmune conditions and those who are healthy. As he started talking about “the boric acid cure,” competing thoughts were going through my head. On one hand, he’s a very nice person who’s trying to be helpful. On the other hand, he doesn’t have a clue about RA, and has no idea how much more complex it is than something that can go away with a quick fix. Since we were about to leave, and I was really tired, I was trying to decide if I should just smile and say thanks, or if I should summon up the energy to do some educating. But then . . .

His wife jumped in and said, “Her disease is autoimmune. Her body is fighting itself. It’s not just going to go away with something simple. It’s rheumatoid arthritis.” My heart swelled as her words spilled out like the sound of cherubs singing. That is, until he responded, “I know, I have arthritis too.” Hearing that quickly killed the moment of elation I’d felt at hearing her words. Yet, she immediately said, “No you don’t, not autoimmune. It’s completely different when it’s autoimmune. With autoimmune the entire immune system is confused, and there’s no quick fix. That’s different than your arthritis. There are many things that can be tried, but you have to look at each one of them as part of the whole picture. You wouldn’t tell a diabetic to take boric acid instead of insulin, and it’s the same with rheumatoid arthritis.”

I was blown away. This friend does not have an autoimmune condition herself, nor does she have a medical background, yet she understands RA so well. Not only does she get it, but she stood up for me and did the educating that I wasn’t sure I had the energy to do myself. It was a beautiful moment, like one of those final scenes in a movie where the crowd sets into a slow clap that builds until everyone is cheering for the protagonist. However, I didn’t have to be the protagonist. Instead, I was the person leading the slow clap. I told my friend, “Right now you are a hero to thousands of people who will never know you. People with autoimmune diseases so often feel misunderstood, but you just said what we wish everyone already knew.”

It’s easy to get frustrated with the lack of general knowledge about this disease. Those of us with RA often already feel separated from the activities, hobbies, and work that we enjoyed before this disease got in the way. When we feel misunderstood by others, it only adds to that feeling of separation from the land of the healthy. It is therefore incredibly powerful when someone takes the time, energy, and curiosity to learn about another person’s reality, and then goes to the trouble to share what they’ve learned with others. I frequently feel disconnected from others when they inadvertently show me how little they understand about my reality. Yet, every so often there is a person who demonstrates how much she cares by being interested and informed about my challenges, an occasional champion who fills up my heart and gives me support and courage for the continued battle with this disease.

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

  • Marshall
    4 years ago

    Tamara, your articles so vividly describe my experience managing RA as well! The “have you ever tried _____? I heard it cured so and so’s brother completely from RA” situation happens regularly. Usually I grin and bear it, and yes–try to remember that the suggestions are made with good intentions. However, the aftermath usually brings forth a big cloud of judgement and negative self talk about how I manage my RA. I then spend time reassuring myself that ” YES I do have control managing the symptoms to some degree but NO I don’t have the cure—and neither does so and so’s brother. It’s not on me.”

    Sadly, there are those out there that believe that it is on me/us–and those of us with RA and/or other autoimmune diseases have the cure in our reach, but we are too lazy or uninformed to grab it. Continuing to educate is key-and your article made me realize that I should take EVERY opportunity to educate politely. I am also aware now that it may take a few times explaining the facts about RA to others before it sticks! Repetition can be key with loved ones. Love love your writing! Many thanks

  • Tamara Haag moderator author
    4 years ago

    Hi Marshall, Thanks so much for sharing your experience and perspective! It’s true that it’s so easy to be hard on ourselves, and sometimes we judge ourselves even more harshly than others do, in spite of being fully aware of the realities of RA. Thanks for this reminder that education often involves repetition, and that while educating others we also need to take a moment to reassure ourselves. Wishing you all the best, Tamara

  • Katdeere
    4 years ago

    Boy oh boy do I relate to this article. Even though I’ve had this diagnosis for almost 5 years now, my husband still doesn’t get it. Either he asks all the time how are you feeling are you better today? Sometimes I want to scream because it is an always bad to some degree and isn’t going to miraculously go away, and making me feel like I’m pheasant under glass really doesn’t help. He is also always telling people how I am. I’ve asked him to just let it be as I don’t always want to be looked at with some form of sympathy/pity, or always being asked how are you today. I’d like to just get on with living.

  • Tamara Haag moderator author
    4 years ago

    Thanks for sharing! I’m glad you found the article helpful. You may find that you can relate to this one as well, as it references that desire for RA not to be so prominent: https://rheumatoidarthritis.net/living/when-the-disability-becomes-visible/.

  • Jana
    4 years ago

    Your articles are some of the first words that I’ve ever read that so accurately describe life with RA. They make me feel like there really is someone who knows how I feel.

  • Tamara Haag moderator author
    4 years ago

    Hi Jana, your kind words just made my day! Thanks so much for taking the time to share them. It’s hard to have this disease, but it is incredibly rewarding each time a community member finds some comfort or sense of support when reading an article. If we have to live with this disease, at least we can deal with our challenges as part of a community. Thank you!

  • jlosin
    4 years ago

    Tamara,
    I really enjoy your articles and I want to say “Thank You” to your friend for putting it out there. My life with RA is a daily struggle, and I look forward to the articles and hints I find in the newsletter. Keep up the great work!
    Jim

  • Tamara Haag moderator author
    4 years ago

    Thanks so much, Jim! It’s wonderful to hear that my articles are helpful to others! Thanks for sharing that, and I do hope this website and our online community can be a source of support in your daily struggle with RA. I wish you all the best!

  • Cassandra Bird
    4 years ago

    What a great moment! This is how I wish all my friends would react to my autoimmune disease(s)so thank you for sharing! It really must make a big difference to your battle to have people around you who genuinely care enough to educate themselves about what you are going through. Much love to you and your dear friends x

  • Tamara Haag moderator author
    4 years ago

    Thank you for sharing, Cassandra! I, too, wish that this is how all my friends would react, but I’m grateful for the minority who get it! I’m also grateful for the online community, where we can know we’re not alone. Thanks for your comments!

  • Philanthartist
    4 years ago

    Please let your friend know how great her actions made me feel this morning. Of course, as always, your story is wonderfully told. Thanks for all the awesome pieces you write!
    Karen G.

  • Tamara Haag moderator author
    4 years ago

    Thanks so much for sharing those kind words, Karen! I will indeed let my friend know that her words have now buoyed the spirits of people she hasn’t even met. Thanks for being part of our community!

  • Gatodelsol
    4 years ago

    Great article! Your friend is certainly MY hero!

  • Tamara Haag moderator author
    4 years ago

    Thanks so much!

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