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Pencil Me In

Pencil Me In

There is a lot to hate about rheumatoid arthritis: the pain, swelling and fatigue, the side effects and expense of treatment options, and the fear of what the future with a degenerative disease holds, just to name a few. However, one of the aspects of living with RA I hate most is the impact that the inconsistency and unpredictability of the condition has on my ability to make plans.

I don’t know how many times I’ve had to cancel or reschedule plans with friends or loved ones due to symptoms flaring up. I have had tickets to events I ended up being unable to use, airline tickets that I had to get refunded (luckily with a letter from my doctor I was able to get refunds even on non-refundable flights), and work commitments that I was unable to fulfill. Because of my RA I have missed weddings and international travel experiences that I’d spent months planning. Living with arthritis is like playing with an etch-a-sketch, where I spend lots of time and concentration on my design, and then RA shakes it up and erases everything I’d worked so hard on creating.

Of course, people who don’t live with chronic conditions often have a difficult time understanding why I can’t follow through with the plans we’ve made together. Once my husband and I were making a six-hour drive to meet relatives at a beach destination. I was in a flare, which of course I couldn’t schedule the way one can book a rental house. We were not on the road long before sitting in the car and the pressure of the seat belt against my body was too painful to endure, so I asked my husband to pull over so that I could lie down in the backseat. However, that didn’t help much, as each bump in the road jolted through my joints, each curve or turn caused my body to strain in counter-movement, and even the sensation of the car moving across the pavement rattled painfully through my body. I begged him to drive slower and to turn less sharply, but it wasn’t my considerate husband’s driving that was the problem, it was my RA. Finally, with sweat on my brow and tears in my eyes I told him halfway through the trip that I just couldn’t bear it any longer, and asked him to find a hotel. When we called my relatives to let them know about this detour, they didn’t voice anything other than disappointment that they wouldn’t see us until the next day, yet I could sense disbelief that we were turning a six-hour trip into a two-day trip. I hate disappointing people, but in that moment I couldn’t care about their perceptions, and only needed to get my outraged body out of that car and into a bed.

At least we were still able to make it to the beach. There have been many times when I have missed one-time events and/or rare opportunities to see loved ones who live far away. In addition, there are those ill-timed flares that seem to occur each time I try to schedule and reschedule plans with an individual. Most people can understand one reschedule, but when it’s the third time I have to postpone plans I feel like I have to go into detail in explaining that it’s truly not any lack of enthusiasm that is disrupting our plans and is solely my unpredictable RA.

I am a very social person, an extrovert who usually feels more energetic after spending time with others than after an evening alone. Yet, RA often turns me into a reluctant introvert; there are many times when I just don’t have the energy to contend with my pain and carry on a conversation, or even sit up and walk around. I have always strived to be a dependable and loyal friend, yet my arthritis often gets in the way of that. Instead of being able to say, “Count me in,” I feel like I have to say, “I really hope I can make it.” Of course, the people closest to me are used to this, and if they feel any resentment about it they are too considerate to disclose it. Yet there have been many other people who don’t understand my reality, and these people either never become good friends or become relegated to acquaintance status. On one hand I am frustrated when people can’t understand how little control I have over the way my body feels, but at the same time I myself don’t understand this fluctuating, unpredictable, fickle beast of a disease. No matter how many years of living with RA go by, I continue to be surprised by the unexpected flare ups of pain and fatigue, and I never seem able to become less frustrated with the impact this has on all aspects of my life.

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

  • JJmcgee
    3 months ago

    Great article, describes so much of what I am going through!

  • Tamara Haag moderator author
    3 months ago

    Hi JJmcgee,

    I’m so glad you found it helpful, although I’m sorry you go through this too. Thanks so much for sharing your comment, and please continue to do so whenever you feel so inclined.

    Gentle hugs,
    Tamara

  • Cynthia Ventura moderator
    3 months ago

    Just saw this and am so happy I did! I can always count on you @tamara to get to the heart of things. I was just pondering my social isolation that keeps getting more and more isolating as the years pass with this disease. I am naturally introverted but enjoy the fun and camaraderie of getting together with friends and family. But like you I find myself often voicing the same fears you and countless others do, “I hope I can make it.” Many times I am unable.

    More common for me is to have friends and family stop by to visit me instead of me going to them. I have a wonderful nephew who visits me every Saturday. He never complains if I’m bedridden or less than fully engaged and he looks past the dust and pile of dishes without a sneer or judgement. I am so blessed to have him in my life.

    He and my wonderful husband are my joy. I have a few friends left standing, many more have abandoned me but I thank God for those who have remained. They are my true friends, the others imposters. I love this community where I have found understanding and true caring.

    It is articles like yours @tamara that help me feel whole, that I am not alone. Thank you.

  • Tamara Haag moderator author
    3 months ago

    Hi CynthiaV,

    Thank you so much for your comments! It is so fulfilling when anything I’ve written resonates with someone else struggling with this disease and makes them feel less alone. Thank you for taking the time to share that this article did that for you.

    Thank you also for sharing what the impact of RA has been on your social life, as that helps others feel less alone. Yes, the ones who stick by us during the hard times are the invaluable ones. Your nephew sounds like a wonderful person, and I’m so glad you have him in your life. As you mention that your husband is also wonderful, I’m including this article that may also resonate with you, if you haven’t already seen it: https://rheumatoidarthritis.net/living/love-letter-supportive-spouses/

    Thank you for being part of this community and helping us all feel less alone.

    Wishing you all the best,
    Tamara

  • NancyB
    3 years ago

    Hi, I’d like to respond to some of the comments and concerns. I was diagnosed with RA in 2007 and suffered painful swollen joints, even while on medication. When I retired in June of 2009, I began researching foods that trigger inflammation vs. foods that help maintain low inflammation. Within three months of eliminating trigger foods from my diet, I noticed a significant reduction of inflammation in my joints. This experience was so inspiring I felt compelled to journal my results beginning in January 2010.

    After five years of hard work and self discipline, I have kept my RA under control without taking medicine. I have an annual blood test and the results confirm that my blood markers for C Reactive Protein and the Erythrocyte Sedimentation Rate are both in the low end of normal. I haven’t forgotten while on medication how I continued to have moments of crippling pain, painful Cortisone shots, felt hopeless, discouraged, depressed and exhausted all the time.

    I have officially launched helpful eBooks including cookbooks geared towards helping folks with RA or other inflammatory diseases harness the healing power of food. Now over five years into eating de-flaming foods, I have regained freedom of movement, range of mobility, energy, flexible joints and can sleep through the night. My hope is that people in the RA community might find relief from their symptoms by eating a ‘de-flamed’ diet.
    Nancy Burnett, Rheumatoid Arthritis Educator

  • Tamara Haag moderator author
    3 years ago

    Thanks for sharing your story, Nancy! That’s wonderful that you were able to find a diet that helps you so much. All the best, Tamara

  • PEP010
    3 years ago

    This is one of the best columns on RA I’ve ever read (and I’m a professional writer). The inability to consistently keep engagements is embarrassing, frustrating, and ultimately makes you the “odd man out.” I’ve learned the hard way that some people get angry if they have to reschedule say, a simple luncheon, and will drop you as a social activity friend. Pretty much, unless you can consistently do what other people want when they want it, you have no worth as a person. I have been lucky enough to find the very few who understand that I am not staying home (often in bed) by choice, but because my life became f*d up by an incurable disease. If you know someone with RA, lupus, fibromyalgia, MS, etc. please remember that they don’t control their lives any more– their disease does. And please don’t compare people with illnesses in competitive, demeaning ways’– “well, my cousin has fibro and she still plays softball” (the rest of the statement is always the silent “so what’s wrong with you?” ). When I first had RA I was working 40 to 50 hour weeks in a high stress position (and for far too long), but that changed. As things will change for anyone fighting these diseases–and we never know how or when. Remember this: how you treat someone who’s dealing with problems like these says a lot about you. If you’re the person who decides not to invite someone because “well,they won’t come anyway,” you are betraying some pretty selfish characteristics. I can’t cure my problems–but you can cure yourself of lessening the value of the handicapped person. Note: I posted this comment with your article lead-in and link on FB. I hope many people read this great column.

  • Tamara Haag moderator author
    3 years ago

    Thanks so much for sharing your thoughts and experiences! Yes, the impact of chronic illness on one’s social life can be profound. Over the years, I have found a core group of true friends who are understanding. There are many friendships that fell by the wayside over the years because this level of understanding was not present. As you mentioned stress, I thought you also might be interested in this article: https://rheumatoidarthritis.net/living/stressing-about-stress/. Thanks for being in our online community and sharing your perspective with us. I wish you all the best!

  • Lisa
    5 years ago

    Its good your husband understands and you have friends who get that this is not in your control, you are in its control. My husband and children dont believe Im in pain, I look fine so it must be in my head or I have just gotten lazy. Good luck to you.

  • Tamara Haag moderator author
    5 years ago

    I’m so sorry to hear that, Lisa. This disease is hard enough already without contending with it alone. 🙁

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