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.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?