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Transitioning from Diagnosis to Severe RA

My previous article described my diagnosis with Rheumatoid Arthritis in October 2018. Written recently after my diagnosis, that article captured the feelings of confusion, chaos, and grief that a new diagnosis can inspire in someone. Now that a few months have passed, I want to write a revision and update to my previous article, “Things That Fall Apart Can Be Sutured Back Together”. Unfortunately, while I have found a somewhat successful treatment plan, my condition has all but worsened, prompting another shift in both my treatment and in my understanding of myself and this condition.

The biologics talk

My first appointment with my rheumatologist after my initial diagnosis–which ironically was on my 22nd birthday– revealed a particularly nasty development. After listing my current symptoms and comparing my x-rays, my rheumatologist noticed that the joint damage I was experiencing was rapidly advancing, forcing him to label my condition now as severe RA. This came as quite a blow. I knew that my condition was not exactly improving (perhaps there was a layer of denial in accepting RA in the first place), but I had no idea it would progress this much, so much to the point my rheumatologist recommended that I begin taking Humira.

Hearing this recommendation from my rheumatologist left me shocked. I was confused, upset, tired; I felt misunderstood and as if the past three months had been a blur. I had only just been diagnosed with a disease that is profoundly life-changing, and now, in such a short time, it had progressed to the worst form of the disease. I felt I had taken so many steps backward from where I had been in October. I had no idea what to do; I was lost.

What did severe RA mean for me?

After expressing my concerns with my rheumatologist, I nevertheless agreed to the Humira prescription. I knew it was the right thing to do, but nevertheless, I expressed my concerns about taking such a strong medication. In addition to the potential corporeal ramifications of this biologic, I felt some traces of shame and guilt in beginning this biologic. This mostly stems from the rhetoric that we use to talk about Humira treatment. We’re all aware of the Humira commercials that are primarily targeted for elderly populations. In many ways, as someone who is so young, I feel somewhat isolated from the target demographic of these commercials: it adds another layer of confusion and self-consciousness to my experience with RA. It causes me to be aware of how serious this condition is and how much my life has had to change because of it.

More importantly, when we listen to those Humira ads, we often hear the announcer say: “Talk to your doctor about taking Humira for your moderate to severe rheumatoid arthritis…” When I hear these ads, I think to myself, “what does that linguistic shift in the quality of RA mean for how I construct myself? What are the physical ramifications of calling this disease severe RA and how does it affect how I tell the story of my body?” In asking these questions, I think about how my body has become subjugated to different situations of language. I think about how much my body has experienced in such a short time: how my body has become a site of change, of medication, and, uniquely, of strength. I am therefore reminded how my body becomes something to be written out, spoken about, negotiated, and disseminated throughout the ether of this existence.

What have I learned so far?

Despite the negative feelings surrounding the worsening of my RA, I am forever thankful that medications for this disease have significantly improved over the past few decades. I know that without Humira (and other biologics), many sufferers of RA would be in a worse physical condition and would, therefore, have a decreased quality of life. I know that Humira will make me stronger and will ultimately improve my condition. I have to remind myself that I walk this delicate balance between the advances of medication and the social stigma that arises from those medications. My goal both in my life and in dealing with this condition is to always be thankful that I can grow and learn from these experiences.

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

  • Patricia Darstein
    6 months ago

    I honestly do not see Humria targeting the “elderly” population unless you consider 50 something elderly. I see it just being shown for alot of different disease treatments. All I can tell you is I too have severe RA but once you find the right treatment you can stop the continuation of damage. Humria didn’t work for me but I did find something eventually, that does work. GOOD LUCK!

  • David Advent moderator author
    6 months ago

    Hi Patricia, I think the way that I approached the Humira commercials was through a lens of recognizing that I, as someone who is only 22, am probably not the target audience for those ads. But, you’re right in that Humira is definitely being pushed as a choice of treatment for multiple disease. Thank you for the good wishes, and I wish the same for you. Thank you for being a member of this community! -David (RheumatoidArthritis.net Team)

  • Dbarku2
    6 months ago

    Humira doesn’t fix what’s already broken though. There are 2 severe targets for the pain fairy to attack at will for me. It took two years and leaving my trusted rheumatologist to come to humira. It’s too late for damage control but as I understand it all, Humira will slow down or stop progression. Nothing I take will repair physical, emotional and mental agony from RA. Already a cancer survivor and a just so near fatal head on collision survivor. So what nearly killed me twice HAS made me stronger. Why in the world am I now going thru this RA mess? Am no old testament Job …

  • David Advent moderator author
    6 months ago

    I’m sorry to hear about your struggles with both RA and cancer. It’s something I have wondered about too, this questioning of why did this disease happen to me? I don’t know the answer yet, but I believe that it will teach me more about myself and what I want out of this life. No matter what, though, please know that this community is here to support and help you! -David (RheumatoidArthritis.net Team)

  • Jo J
    6 months ago

    Best wishes on your treatment plan with Humira! It’s been a life saver for so many people with RA.

    The language of disease, and stories and images of successful treatment bombard us in the time following diagnosis. I am almost 2 years post diagnosis, and somewhere over 3 years since symptoms started. When on my first visit my rheumatologist told me “You have moderate-severe Rheumatoid Arthritis” I wanted to celebrate having a diagnosis but was frightened by the moderate-severe category. This was one month after another Rheumatologist told me, “I don’t agree with your symptoms” and dismissed me from her practice. So which is it: Am I a faker or do I have severe disease???
    At first when I saw ads for Biologics I was excited to see how much better I would feel if I only I got onto one of those miracle drugs! Others watching the ads would wonder with all those side effects, who would even try that drug?
    When my first biologic wasn’t effective, I began to resent those idyllic ads. I told my doc I was a bit embarrassed at “failing” this incredibly expensive miracle drug. He set me straight immediately, and told me I was not allowed to say I failed treatment.
    My current treatment, including a traditional DMARD and another Biologic is bringing life back to my life. I’m an optimist at heart and feel so good when life reinforces that point of view. I try to use the Language of Hope when discussing my disease and treatment.

  • David Advent moderator author
    6 months ago

    I had the exact same feeling, Jo, that feeling of “I’ve finally figured out what’s wrong with me” while also thinking “oh… so that’s what this disease is.” It’s interesting to think about how the language we use colors our perceptions of both this disease and of ourselves. I’m glad your treatment plan is going well, and I wish you the best as you continue that treatment! -David (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips moderator
    6 months ago

    I am glad you have found some comfort as you start this journey. It will still get better, never perfect, but better. Frankly I have no memory of perfect, but I do knwo much better. you will be at this point as well. Many Blessings.

  • David Advent moderator author
    6 months ago

    You’re right, Rick! I would go so far as to say that perfect doesn’t really exist. We can only manage the present; that’s what I plan on doing. Thanks for your comment and thank you for being part of this community! -David (RheumatoidArthritis.net team)

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