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Denial and RA

People have often told me: “RA can’t be that bad, it’s just a little amount of pain.” This is categorically false. I cringe when I hear this, especially when that person doesn’t have RA at all. Clearly, there are some misconceptions on what RA is, what it encapsulates, and on the lifelong effects of this disease.

Most of the time, I simply choose not to say anything to these types of comments; however, as those thoughts have continued to swirl around in my mind, I’ve come to realize that those comments end up translating into nodules of denial of this condition. I begin to internalize these statements: “Maybe my RA isn’t that bad, maybe I am overreacting, maybe my life isn’t that difficult.” These experiences have propped up a singular question in my brain: what is the connection between denial and RA?

The self-protection of denial

In many ways, denial can be a form of self-protection. This is really common in the beginning phases of having RA because the nature of the disease, in all of the changes to medications, lifestyle, and ways of thinking it causes, is overwhelming. In my personal experience, trying to convince yourself that things aren’t that bad, that your joint pain is transient and can be mostly alleviated with ibuprofen, is a way of denying the longevity of RA as a condition.

When I was first diagnosed, I was unaware that RA can affect more than your joints: your heart, your lungs, and your kidneys can also be affected. That’s because RA, as opposed to osteoporosis, is an inflammatory disease that weakens the immune system and fully accepting that—both in terms of longevity and health—is exceedingly difficult for me.

What can denial do in terms of your condition?

If you consistently deny the effects that RA has on your health — if you even know that you have RA to begin with —more and more problems begin to accumulate. My story with denial is a bit unusual. I began feeling symptoms of RA in May 2018 when I was 21 years old. I’ve talked about this a little bit in previous articles, but my hip felt like it was on fire, and I could barely walk.

Obviously, for the first month, I didn’t think I had RA at all. But, as I talked with my doctor more and started doing more research (WebMD should be taken away from me…), it became more clear that I had RA. And what did I do with these premonitions? I squashed them down, tried to tell myself that what was happening was not that bad, that I would be okay, and that this would go away soon. It didn’t. And one morning in September, I woke up and couldn’t close my hands on my comforter. That was the exact moment I realized my denial.

Moving forward

In looking back, I wish I would have gone to the doctor sooner and insisted to be tested for RA. My denial prevented me from getting on the correct treatment plan sooner. As a result, there are joints on my body that are still deformed and will be, for the rest of my life: my left elbow and right hip will forever bear the effects of this disease.

And moving forward, my plan for treating RA involves being attentive and honest with myself about the ramifications of this disease. That yes, this is scary but I am fortunate enough now to have a diagnosis and to have a treatment plan guiding me toward health. My health has been compromised but my resolution to live the life that I want is concrete.

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

  • Cynthia Ventura moderator
    1 month ago

    Great great article. Thank you @mda1847 for your consistent depth of honesty in your writings. Plus, you bring up an interesting point. To what extent does our denial of our symptoms affect our outcomes?

    Like you I too was in denial previous to diagnosis and for years after. I too suffer from irreversible damage to joints. I think if you asked 100 diagnosed RA sufferers you would find 95 out of that 100 admitting the same thing. But I never before put the two points together as you have. I chalked it up to the physicians I saw previous to diagnosis for being incapable of properly diagnosising and committing to a potential patient. But now I realize that I too was a part of the problem. I wasn’t being honest with myself. I resisted admitting that I had a chronic illness because the thought of that was overwhelming. Granted, it was over 15 years ago and protocols have changed but I was not proactive enough. I allowed others to define my response.

    That is why I believe it is just as important to seek out mental health services when you are diagnosed or going through the travails of getting an accurate diagnosis of any chronic or catastrophic illness. We cannot take on serious illness alone. A proper mental perspective goes a long way towards dealing with the systemic ups and downs and especially the incessantness of RA.

  • Richard Faust moderator
    1 month ago

    Thank you for writing CynthiaV. You are absolutely correct about the emotional and mental aspects of RA. Sometimes these aspects take a backseat to the physical, but they are very real and important and it is all intertwined. This article from our editorial team looks at these aspects and the reactions to receiving a diagnosis: https://rheumatoidarthritis.net/symptoms/depression-anxiety-and-emotional-problems/. I would add that it is important to look forward to the next and best steps in controlling the disease. As discussed in this article from one of our contributors, a continued effort to not neglect mental health can absolutely assist with that: https://rheumatoidarthritis.net/living/dont-neglect-mental-health/. Best, Richard (RheumatoidArthritis.net Team)

  • Cynthia Ventura moderator
    1 month ago

    Thank you Richard @richardf for the links. I will definitely read these posts. As someone whose background is in mental health services I recognize the need for others as well as my own needs in this important component of overall health. Be well.

  • Lawrence 'rick' Phillips moderator
    1 month ago

    That is funny, looking back I wish I had recognized that something really was wrong and not just me being weak or that it was all in my head.

    I did that for over five years knowing it was getting worse, but thinking, oh it is just me. Well it was not just me, it was real. When I look back I say how darn dumb to have waited.

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