Skip to Accessibility Tools Skip to Content Skip to Footer

Counting My Blessings: My Support Network

While the holidays can be wonderful, all the holiday cheer can also highlight the aspects of our lives that make it hard to feel cheerful. RA can bring out the Grinch in me, so inspired by the Whos down in Whoville who sing in spite of their loss, I am challenging myself to think about all that I can be grateful for. This series will spotlight the elements that make life with RA easier for me to bear.

A support network is vital in successfully managing chronic illness. Unfortunately, it’s not always easy to find, and there are many wonderful people who don’t receive the support they need from their friends or family. Reflecting on the negative interactions I’ve had with others regarding my RA, ranging from insensitive comments to outright discrimination, leaves me all the more grateful that I am fortunate enough to have people in my life I can count on.

My Husband. I am extremely lucky to be married to a man who is a wonderful caregiver. He strikes the balance perfectly between being there when I need him without hovering or excessive doting when I don’t need assistance. He always validates my experience, never minimizing it nor suggesting that I could do something differently to change my RA. Always patient with my physical limitations, if he is ever put out by occasionally having to slow his pace or sit out an event, he never shows it.

We dated for two years before getting married, and within a few months of our nuptials the “for better or for worse, in sickness and in health” promises were put to the test. I’d been on Enbrel for seven years when its effectiveness waned and I experienced the worst flare I’d had since being diagnosed. My rheumatologist instructed me to wait for the Enbrel to get out of my system before beginning intravenous Orencia, and even after starting treatments the wait for relief continued, as it took several weeks for the Orencia to have a noticeable impact on my disease activity. I was on sick leave for months, and most days I was taking painkillers several times a day. I know it couldn’t have been easy for my husband to see his new bride in pain, depressed, frustrated, and often in a “hydrocodone cloud” of fuzzy-brained side effects, not to mention a greatly decreased libido. Yet, he not only stuck by me, helping me daily in dozens of small ways, he didn’t let on how hard and frustrating it must have been for him to see our new life together so heavily impacted by my poor health.

My husband was my lifeline during those months (and in all the years since), and I hate to think about how much harder that time period would have been without him. I recognize that many people suffer through such episodes without support like that, and I know I am incredibly lucky to be in such a supportive partnership.

My Friend. I am blessed with many wonderful friends, each of whom has unique traits and talents that make him/her special to me. Generally I wouldn’t consider chronic illness to be one of those unique traits, but when coupled with compassion and thoughtfulness it is the recipe for an ideal friend for the RA sufferer. My dear friend HT also has a disease that greatly impacts her life. In addition to sharing a similar sense of humor and worldview, sharing the experience of chronic illness allows us to relate to one another in a way I can’t with most people. If one of us isn’t feeling well, the other is always willing to creatively alter plans to accommodate needs or to cancel altogether without feelings being hurt. We can talk about our struggles without worry of seeming whiny or self-pitying. HT can lift my spirits with a simple text message, striking at the heart of the matter with just a few typed words. And when I take a step back and look at her life overall, I simply marvel at her. Her condition can be debilitating, and it would be impossible to count how many days she’s had to cancel whatever she had planned in order to cater to the demands her disease insists on. Yet, she is a person who not only continues on, she makes dreams come true. She has had so many ideas that others have scoffed at as unrealistic, yet she has not only made them happen, she’s made them successful. Her spirit is infectious, and spending time with her reminds me that hopelessness, self-doubt, and pessimism can be more disabling than a chronic illness, as her optimism and confidence has shown what is possible with perseverance.

If I had the power to take away her pain and discomfort, I would do it in a second. However, as I don’t have that power, I count myself as lucky to have a friend who is so funny, kind, interesting, inspirational, and who can understand the nuances of having a chronic condition and relate to me in a way few can.

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

  • Darla
    4 years ago

    Glad to hear you are blessed with a support group to help out. Dealing with
    a chronic illness puts a strain on everyone. Your Husband sounds wonderful.
    I don’t think I could manage without my hubby, and all his TLC. Friends that
    cheer us up when we are hurting & blue. They keep us feeling connected.
    Mine keep me focused on the things I have been able to achieve, instead of
    ones I had to let go. Grateful they are in my life.

  • Hillary Ross
    4 years ago

    You are incredibly blessed. I also developed symptoms of RA just months after getting married. However, my husband (now ex husband) has bipolar and it was extremely hard on him when I was sick (which was most of the time).
    I got married in april ’07 and didn’t get a dx (I’ve also got Ankylosing Spondylitis & fibromyalgia) until August ’10.
    My ex husband left me in April of 2012. He did it in the most cowardly way possible (made me think we were getting back together, only to get divorce papers a few days later).
    I’ve lost so many people in my life and now only have a handful of friends who try to understand, but I’ve found out they’ve been talking behind my back questioning my illnesses. I was devastated, to say the least. In their defense, I’m sure it’s confusing to them to see me up one day and down the next. If I didn’t have all of these issues, I know I’d be confused too.
    I’m so sick & tired of the isolation & loneliness these diseases create for us. I wish I could say I had a support network, but I just don’t.
    Does anyone have any suggestions as to how to create a support system?

  • Poll