Isolation

The journey of the lone protagonist, forgotten and consigned to oblivion, is the plot of innumerable movies, dramas, novels, and historical narratives. Something about a single individual, whether stranded and alone, battling the elements or striving to find meaning in the chaos of modern day life, calls to something within. Often the protagonist is confronted with a seemingly impossible conflict, and resolution requires periods of intense isolation. In other iterations, the hero is abandoned by the group or cast out in exile and forced to seek some deeper knowledge and understanding within.

A recent book I have been reading tells a similar story, though it is about a two-century-old mathematical model that has slowly survived academic and intellectual battles. Once celebrated two hundred years ago, the Bayesian theorem fell into disuse. For a time it disappeared almost entirely from notice. Though it was a crucial tool for breaking the Enigma code of German military communications during World War II, the methods used were classified by Winston Churchill. Now Bayesian statistics has finally achieved its heyday at the dawn of the dawn of the 21st century thanks to its utility with Big Data. To my surprise, even stories about a mathematical theorem can be told as a narrative of struggling against odds and surviving.1

Living with a chronic illness is just such an unseen story.

What I find missing from these prototypical narratives that permeate popular discourse, is that not all isolation is glamorous, results in the discovery of inner truth, or is a journey of new discoveries. Living with a chronic illness is just such an unseen story. The isolation that can come from having friends and family minimize what they often do not see and cannot know is a devastating neglect of a very basic social need of mutual understanding, empathy, and a sense of belonging.

I often encounter the claim that the Internet is creating more anonymity and social isolation rather than bringing people together and that human communication is losing authenticity. Though I can see some truth in the viewpoint, in terms of having a chronic disease, I find the opposite is true. Though anonymity exists online and I will likely never meet the many people whose essays, thoughts, and comments I read…

I find that just knowing that others are also striving through this type of suffering brings me determination and hope.

The story of an individual suffering with a chronic illness may not be glamorous, or the plot of the next blockbuster or best seller, but it is a powerful one. Millions of people throughout the world go about their daily lives in intense pain, frustration, and disappointment. They often do so with few (if any) in their immediate circle who understand. That requires daily courage. That requires immense perseverance. It is a story worth telling.

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.
View References
  1. McGrayne, Sharon B. (2011). The Theory That Would Not Die: How Baye's Rule Cracked the Enigma Code, Hunted Down Russian Submarines, and Emerged Triumphant From Two Centuries of Controversy. Yale University Press. Print.

Comments

View Comments (7)
  • Millzy
    2 years ago

    I’m going through the ‘isolation’. I have been on every biologic there is and nothing really works. My RA doctor said I am just one of those people who the biologic’s don’t works as well as they do on others. I just spent 7 days in a psych unit because the constant chronic pain is depressing. I have a ton of other issues, but this is about RA. I spent 8 years in the military and was always extremely physically fit. At one time I could do 102 pushups in 2 minutes. Not bad for a female. Now I need help getting out of bed. I’ve been denied twice for SSD and have my hearing before a judge in April. This has been a tough pill to swallow. I wish I had some friends to hang out with who are going through the same thing. My family is very supportive, but I still feel the isolation. There are so many things I still want to do. I am glad to be here and hopefully talking to others I can learn ways of doing things.

  • 2mra
    2 years ago

    Aww Millzy, I’m sorry that you are in the similar situation as I am and many others with severe RA. I’m so glad that other patients are getting good results from these “miracle” biologic medications. At least they have a chance of living their lives the way they want to, for the most part. With the same token, it’s sad that these biologics do not work for the rest of us since we are resistant to them and some other types of meds like pain killers.

    RA is a horrid disease and it really wrecked my life as it has done to many of us. I really resented the fact that I had to give up my job and that I couldn’t enjoy our Kids growing up like I was supposed to. The many years of fatigue and pain has been very frustrating.

    On the other hand, I am grateful for the few medications that did put me in remission which made those years a dream. Millzy, I was wondering if you have tried most of the older medications before the biologics? They saved me from getting complications for many years. Now it seems that a patient only needs to try one of the older meds which may not work, just to find that they hopped on the biologic meds to discover that they don’t work, for the most part. I wonder if they then go back and try the older meds. I was happy that I didn’t get the bad side effects from the drugs that I tried except for 2 of the biologics. I do hope that the same happened for you with no side effects or just minor ones. Someday soon, the drug manufacturers will develop a worthy medication that will put you, I and others like us, into remission, so that we can do all those things that we were planning on doing and other stuff.

    That is great that you were able to serve in the military for 8 years. That’s a nice amount of time, although your heart probably still hurts for your career. That feeling will eventually fade some in a few years, if it hasn’t already. Looking after your body and your mental and emotional health is way more important now, as you know.

    Your country does Thank You for your important work and good efforts that you put in while you were able to.

    I see my family often enough, I don’t feel isolated too much but I know that many do. I do enjoy my own company( and No, I am not a narcissist 😀 ) and chatting with different people on the net.

    I did meet 3 of my net friends once which was wonderful. They live too far away though. Only 2 of my other non-net friends liked to talk on the phone like me, so those are the friends I kept since I tire too easily from people visiting whenever THEY feel like it. Hubby and I did go shopping usually weekly and visit my Mom, or to see a movie, etc. Right now I can’t do much since I am in a wheelchair, for how long, I do not know. Dr. visits and so on are a challenge for sure. Once in a while I’d like to go out with a friend somewhere fun and/or weird but they work during the day.

    Keep fighting for that SSD. I don’t know why they make it so tough for some of us. When I originally called about mine, the lady said that I did not qualify. The second time I called(a different lady), she said that I did not qualify. WHAT?? My Hubby called(another different lady), she told him, YES. She certainly did qualify.

    Best of luck to you in April, Hon. Sending you, “good feeling” vibes.

    Thank you for writing about another important topic, Michael.

  • Michael Booth moderator author
    2 years ago

    Millzy, thank you for you comment and for your eight years of service. I am very sorry to hear that things have declined so drastically and that finding an effective medication has not worked out. It sounds very difficult. I hope things improve with the SSD case. I have attached an article here on SSD from one of our contributors that may interest you, particularly the last section on appealing a denied claim:
    https://rheumatoidarthritis.net/living/rheumatoid-arthritis-social-security-disability-benefits/

    Like you, I do not know anyone with RA. It can be hard, as the issues we face are often difficult for others to grasp. I hope you will find support and a community on this site, and valuable articles as well. Best— Michael (RheumatoidArthritis.net team member).

  • Lawrence 'rick' Phillips
    2 years ago

    In the diabetes community; we call it spotting a person with diabetes int he wild. We can often tell who they are by seeing them test their blood sugar, take an injection or seeing an insulin pump.

    I wish we had something to generate that cross connection in the RA community. Spotting fellow patients with RA in the wild sounds like such great fun.

  • Eebtool
    2 years ago

    We all suffer with our daily issues and it would be so cool to here about it when a fellow RA clad warrior has a successful or surprising positive day or week. It could be as simple as ” My treatment is going so well that today I was able to tie my shoes with little difficulty!”
    to as big as” I walked for 30 minutes without needing to take a nap after yesterday”

  • btcavanaugh1720
    2 years ago

    Agreed! Actually I find this website to be that connection. I feel pretty alone and misunderstood “out there” but definitely understood here. Thank goodness. It’s a major relief.

    Barbara

  • Erin Rush moderator
    2 years ago

    That’s a great idea, Eebtool! It’s a great idea to celebrate the small and not-so-small victories of our community members each and every day! Thank you for sharing with us. Best, Erin, RheumatoidArthritis.net Team Member.

  • Poll