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The Challenges of Living with an Invisible Illness

The Challenges of Living with an Invisible Illness

Living with a chronic condition like Rheumatoid Arthritis comes with a variety of challenges, one of the biggest ones being that RA is essentially an “invisible illness”. The pain, the stiffness, the fatigue, are just some of the symptoms that may wreak havoc in the life of the person living with RA, but might not be apparent to the people around them, leading to naive and misunderstood comments and comparisons like “But you don’t look sick!” and “My grandmother has arthritis too”.

The invisible nature of RA

A repercussion of “invisible” nature of RA could also translate to a long and often frustrating diagnosis, and subsequently a delay in beginning treatment.

All of this typically translates to an unfavorable impact on the quality of life, ability to sleep, ability to work, ability to participate in physical exercise and activities, and also an ability to perform household activities and duties.

But, the people living with RA are a resilient bunch! They choose not to be defeated by this condition and take all the steps they can to live the best life possible!

RA_2016_Infographic_12-8-16

These findings are part of the recently concluded Rheumatoid Arthritis in America 2016.

Comments

  • Susan Owens
    2 years ago

    Hi everyone. This topic rang true for me. It is very difficult to try to explain that you are in excruciating pain when there are no outward signs that people can see. I’ll try to keep this short…my daughter invited me to Disney World for a week. I was so excited. The second morning, I woke up and felt like my feet and ankles were broken. I had to take each step carefully and slowly. Why now??? My daughter said, what’s wrong Mom, you look fine. You were so good yesterday. I didn’t have side feet from walking the park. This was different. I had to pass on Epcot. My grandkids were sad. I felt I ruined their vacation. I sat in the condo alone. Swimming was pleasurable ♡ Since then, my feet and ankles have been one of my worst areas of pain and inflammation. I rather be barefoot. I cringe to put any type of shoe on. I am also blind in one eye, and had a stroke, leaving me with very decreased vision in the other eye. I fall a lot. I broke my right foot. Of course, since the surgery, the pain is even worse. I have addressed the issue with my rheumy but she says since I am seronegatice RA, it is much more mild than someone with sero+ RA. Perhaps, but I have the swollen painful hands, wrists, ankles and feet. People tell me I hurt because I am overweight and that is the cause of my foot pain. That is hurtful. I wish I could find a shoe that had a big toebox for my feet. I’ve tried orthotics. So what do you do when you are on prednisone and it isn’t helping. I have had allergic reactions to MTX and Arava and Plaquenil caused rashes. Xeljanz made my face swell up. So what do you do when you are in so much pain and the fatigue it causes? Have you ever been asked why are you taking another nap? Even family, except my husband, has difficulty understanding. Just had to vent and be heard by a wonderful group who would believe me.

  • Richard Faust moderator
    2 years ago

    Sorry to hear that you are struggling with these difficulties Susan. Please know that you are always welcome here. Hopefully we and the community can provide you some needed support and information.

    If you feel that your RA is not well controlled, you are always entitled to a second opinion. You mention being seronegative, so thought you might be interested in this article from one of our contributors looking at the issue and the fact that blood tests do not always tell the whole story: https://rheumatoidarthritis.net/living/seronegative-ra-blood-tests-dont-tell-entire-story/#.

    Finding a proper treatment regimen can often be difficult, particularly since, with RA, what may work for one person may not for another. More and more combination therapies are being used. This article from our editorial team provides some additional information: https://rheumatoidarthritis.net/treatment/combinations-of-conventional-and-biologic-dmards/.

    Managing day-to-day pain, of course is a common, but difficult challenge. This article compiles thoughts from the community on managing RA pain: https://rheumatoidarthritis.net/living/community-ideas-managing-pain/.

    Again, always feel free to come here with questions or just to vent. Please keep us posted on how you are doing. Best, Richard (RheumatoidArthritis.net Team)

  • Eebtool
    3 years ago

    If RA was a visible illness, would this Q&A have different outcomes?

  • Calliezmom
    3 years ago

    Overall, an excellent infographic – thank you! However, and as the RA community experiences all too often, your information stops at the joint damage and does not discuss (1) the impact to internal organs due to RA and (2) the problems and complications resulting from the medications prescribed to slow the degenerative process. It is critical for people to understand that there is no cure for this invisible, progressive chronic degenerative disease.

  • Lauren Tucker moderator
    2 years ago

    Calliezmom,
    Thanks so much for your comment. We can certainly being these ideas back to the editorial team so we can get some fresh content around these ideas.
    Thanks for being part of our community.
    Best, Lauren (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips moderator
    3 years ago

    Wow, this is an incredible infographic. I am very impressed.

  • Lauren Tucker moderator
    2 years ago

    Thanks so much Lawrence ‘rick’ Phillips! We are glad to have you here!
    Best, Lauren (RheumatoidArthritis.net Team)

  • SabrinaJhuma
    2 years ago

    Wonderful writing! As a RA patient I really understand each of the words you have mentioned here. And it is very much similar to my life. Keep writing dear…….

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