It’s true that a chronic illness journey is different for everyone. What I see in my rheumatoid arthritis and Sjogrens life may be slightly different than what you see, or perhaps totally different. There may be a few things that are very similar. Here are 5 things that all Chronies must learn to deploy on this crazy thing called “life” –
This one’s so obvious that I almost feel funny putting it on the list. The first word that comes to mind is, “Duh.” Yet we Chronies stay in the trap of trying to do all we did pre-illness, or we fall back in to this snare at some point along the way.
Truth is, our bodies never really get much down-time because we’re always fighting disease. Even when we sleep, our body is fighting. Rest is simply a biological must. Even healthy people have to rest their bodies. Of course we have to balance rest with activity and must resist falling into lazy, but the importance of rest to our overall health status cannot be overstated.
For me, turning the page on I-can-do-all-the-things-I-used-to-do was an important step in embracing rest. I had to get past the mindset of feeling like I had to do certain things because I’d always done them and people were counting on me to do these things despite the changes in my life. Truth is, no one had those expectations of me except me. When others around me struggled with their health, I rightly adjusted my expectation of them. I’ve never looked at the lady who led a fitness class but was diagnosed with breast cancer and had chemo for 6 months, and didn’t reassign her class to another instructor for a while. I never gave a second thought to doing this. Yet I didn’t allow this adjustment for myself. Whey do we do that – ??? It finally dawned on me one day how ridiculous this was and I was able to let it go. Finally letting go of yester-year’s expectation was key in reaching a healthy accommodation of rest for this journey.
Help from others. Oh wow… this is so hard. I’m not sure why, because I love to help other people. “Helps” is a place I score high on in the spiritual gifts analysis tests and my primary love language is acts of service. Making brownies. Picking up some bread/milk. Cleaning her kitchen. Yet, I often push back when others offer to do these things for me. How crazy is that – ??
Friends can’t restore our health, but they can take us to an appointment. Or help us fold some laundry. Or cook supper for our family because it was injection day and I’m puking. Or numerous other things they’re not only happy to do, but would receive a blessing from doing. And for us to take their blessing is a bit self-centered, would you agree? We should get over our self-ness and agree to be God’s object of their selfless-ness for a change. Maybe God is trying to teach them something through our suffering. The real truth is, there’s not a Chrony out there anywhere who couldn’t use some help every now and then.
A few practical insights about receiving help from others might help us out:
People are sincere when they offer to help. They really want to help us out, they often just don’t know how or what. Lots of people really do believe that when they help us, they’re serving Jesus, and this brings them great joy. Jesus himself confirms this concept. A wise pastor once said to me, “Don’t steal their joy. Let them help. And make it easy for them to do so. Let it be about them and Jesus as much as it’s about you.” I’ve never forgotten the words he imparted to me that night, sitting in the rocking chair in my living room.
Followup is my responsibility. It’s up to me to identify exactly what I need help with and communicate that to others. If someone says, “I can help this week, let me know what you need,” then it’s up to me to return a phone call or send a text and let them know that I really could use their help. The first time or two it might seem awkward, but refer to insight #1 and it should get easier with time.
The best way to take them up on their offer is to give them a specific request. “Can you take me to the library Thursday or Friday at 11 am?” is much more likely to complete the process then, “Can we go to the library sometime?” A change from this being burdensome on others to making it easier on them because there’s a specific need and they don’t have to guess, was really helpful in moving me past the stuck step of followup to my friends and family.
Throughout my adult life, and particularly in corporate America, the task of re-grouping has been a necessary part of the daily grind. I’m certain I will never, ever master this skill, despite the years of repetitive lessons. Things change, we re-group and march on. The irony of consistent change is ever-present in a life of chronic auto-immune disease. Diagnoses change; our meds change; our disease state changes as things flare and settle down, only to flare once more. Learning to re-group is just required. It’s not the exception, it’s the norm. Knowing this helps me not get stuck in the frustration of ongoing change and I can redirect situational frustration back to implementing the change itself. This seems a better use of coveted energy and brain power. Letting go of resisting change and grasping backwards for the pre-illness familiar has gone a long way to control stress, too.
I’m all about being with people and we Chronies definitely need to guard against isolation, but there are times when I just need to retreat. Sometimes I get tired and so overwhelmed that I just can’t “people” that day. Retreating is necessary. It’s healthy. It allows me to rest and work through any issues that I might have going on. Maybe I need to re-think how I’m approaching a friendship. Or I need to identify areas that need my attention more, like small house projects (I have meds that expired four years ago – am I the only one who needs to clean out my medicine cabinet – ??) or any number of topics that just need a little of my attention.
Chances are, we Chronies aren’t the only ones who could benefit from learning the art of retreat.
Webster’s defines this in the noun form to be “firm determination.” We absolutely cannot make it through this journey without a heavy dose of determination and resolve. The opportunities to give in or give up along the way are numerous and the journey is always – always – uphill. It requires grit. Much resolve. Fierce determination. Deep breath, fellow Chronies …. we have a long, steep journey ahead of us. Grab your boots, let’s do this.
I hope my simple thoughts today have helped you as you walk this crazy journey with me and so many others. One foot in front of the other. That’s all we can do, and that, my friend, is enough.
Disclaimer: Information contained in this website is intended for educational purposes. It is not meant to replace your healthcare team nor as medical advice. Please contact your physician or medical professional before making any changes to your current care plan, diet, or exercise routine