When I was first diagnosed with rheumatoid arthritis (RA) in 2011, I expected to be able to carry on in my life with the same set of blinders that I had always used, pushing physical and mental roadblocks to accomplish what I wanted. I had been able to ignore my need for sleep and crash later, push myself harder physically and rebound quickly, learn something new relatively easily.
I figured a doctor would prescribe some medication, I would get better, and that would be it.
I was sadly mistaken.
Since then I have been diagnosed with some new condition (or more) every year, including fibromyalgia, Raynaud’s, axial spondyloarthritis (axSpA), and multiple other comorbidities/health issues — disruptive sinus tachycardia, hypothyroidism, and neuropathy, to name a few.
How My Diseases Changed My Relationship with My Body
When I first started to get RA symptoms, they attacked with a vengeance. The aggressiveness just laid me out flat. I finally went to the doctor after the pain and swelling in my feet was so bad that I scooted around my apartment on my butt for two days because I couldn’t walk on my feet. It wasn’t until a year and a half into my journey that I began to get some semblance of relief with my first biologic medication, but the improvement was not very much. I had already begun walking regularly with a cane.
Stepping onto curbs was still scary, as was opening doors in public places. It was a constant struggle to be able to take my clothes off at night before bed and put my feet onto the floor in the morning to walk when they were swollen, painful, and inflamed. Naps became a regular part of my existence and I had to plan and prepare to do simple things like going to the grocery store or driving in the car for 30 minutes.
It soon became pretty clear that if I did not start listening to my sick body now, I would pay dearly for it later. Ignoring pain one day meant missing work the next. Not taking pain medication quickly enough meant not having enough energy or ability to stand in front of the stove to make dinner. Pushing myself to walk too far meant in about two hours my body would crash hard and require a four-hour nap to make up for it. Ignoring the signs that I was in the middle of a flare almost always meant painsomnia.
And not taking my medication on time meant increased pain levels, more brain fog, and the need to stop what I was doing until that ship was righted.
‘Listening to Your Body’: Easier Said Than Done
Over the years, I would struggle with balancing what my body was trying to tell me with what I wanted or needed to. I would resent my body when it wouldn’t support my mental need to keep going, doing, achieving. Finally, I had an epiphany when I realized I needed to think differently about what my body needs.
I realized that our bodies give us signals all the time — hunger, thirst, pain, emotional support or comfort, the need for rest, and more. So why should I be angry about getting signals from my body that meant self-care must come first? If my body needs it, that is all there is to it. I realized I cannot control the course of my diseases, the fact that there are no cures, and that I will be dealing with these (and likely other) health problems for the rest of my life.
Instead, I decided to focus on listening to what I need and making accommodations for that, because I want the best possible life I can have.
Don’t get me wrong: My path to this mindset was not immediate or perfect. It has taken time for me to get to a place where I can still accomplish tasks, perhaps in my own way and on my own time, but I get them done. And by listening to what I want and need I can better plan for trips, holidays, and even making meals during the workweek.
I am going to pass along what I have learned in the hopes that it helps you take better care of yourself too.
1. Look for patterns with your body
I asked myself questions like: What happens after I grocery shop? How many things can I accomplish in a day before my body says, “no more”? Do family gatherings cause me more pain and stress? I have kept a journal at different times as well. By asking these questions and tracking my answers, I know that the day after I exercise or walk more than usual that I will have kickback and be cranky. I try not to plan anything for the next day. I make sure I have pain meds because I know my pain levels will be higher. And I know that I need to schedule downtime after all-day activities or events.
My health is most important, because if I do not care for myself, I won’t be able to function or participate.
2. Do a body scan for pain and unusual signals
I have had anxiety and depression my whole life. One huge issue I have is racing thoughts. When my brain gets going, I have to try to calm it down before it hits a certain level and my mind and emotions spin out of control. One way I have learned to be more in touch with how I feel physically and mentally is to do a body scan. This can be done quickly and anywhere.
I have 24/7 pain and it is only ever a matter of where and what hurts the most. For me, those signals can get all mixed up with my emotions, my flares, being hungry, my racing thoughts, and more.
I take a moment and close my eyes. I take about three deep breaths in and out, trying to make sure that the length of the inhale equals the length of the exhale. I focus on my body (or emotions, whichever I need) and just take note of where it hurts the most. I simply acknowledge the pain and don’t fight it. By being quiet and looking throughout my body — noticing that perhaps the pain is radiating somewhere else or that the pain in my sacroiliac (SI) joints has increased and spread up my spine on either side and now my shoulders hurt — I can see what needs the most attention in that moment and address it.
3. Do a relaxation meditation
Before I was sick, I used to practice yoga and meditation regularly together. One of my favorite meditations is a body scan visualization I learned years ago that I still use. I close my eyes, making sure I am in a quiet comfortable place. I imagine I am in a place that brings me happiness. I love the outdoors so for me that is usually by a lakeside outdoors with my dog next to me. Then I imagine that liquid light is being poured over my body one section at a time. I start with my head then move down to my neck, my shoulders, down my arms to my hands, until I do my entire body.
I do this slowly as I breathe in and out and see the liquid slowly rolling over me and filling me with peace and comfort and pushing out the anxiety, pain, and anything else I need to let go of. I do this down my whole body. And since I have issues with muscles and joints, I usually start with my muscles and then do my bones separately. As the light pours over me I physically relax that part of my body. This technique brings me back to my body and connects me with how I feel in a way that words cannot.
It also helps immensely with stress and helps me identify areas of my body that are tighter and, in more pain, than others.
4. Remind yourself over and over that your body and feelings are valid
This one has helped me quite a bit because I have been lied about, called lazy, told I was exaggerating, and straight-up told I was making up how bad it was. I have learned over the years that my body doesn’t lie. My lower back pain that was dismissed over and over for years was diagnosed as axial spondyloarthritis this past year. Just because someone does not believe me does not mean it is not true.
I have had to say kind things to myself over the years to remind myself of this in the face of struggle and doubt. Being very stubborn has helped that. I have written phrases that remind me of that. And I have amazing friends who remind me when I break down and feel sad, depressed, or frustrated.
They remind me of who I am and what I have accomplished and what I am capable of.
5. Speak up
This one is so hard. Some folks are more communicative than others. Admitting that we need help is vital to our lives but can be super humbling. I have learned to qualify an event or situation beforehand; for example, I let folks know the amount of time I can normally go to an event before I get too tired. I make people aware that loud places are too stimulating to me and I need quieter locations to meet. I never dump all my issues on someone at once, but I let those around me know as situations arise.
At a restaurant, I’ll say that I need to sit in a booth instead of on hard chairs so I can spend more time with them and be in less pain. Last-minute plans are hard for me, so I tell people I must know in advance about going to dinner or seeing a show. This allows me to rest up beforehand and be able to focus what limited energy I have on our time together. It also allows me to plan for downtime afterward.
I present the issue as a need — not a request. I don’t downplay it as some personal quirk. Putting it out there allows those around us to accommodate us in a way that works for us, without making them guess or us feel minimized or ignored. The ultimate benefit of this is it allows us to verbally quantify what we need, which may cause us to think about it in a different way. Verbalizing helps me be more clear about what I need, and to think about it more clearly.
6. Find a creative outlet
I am an artist. I sketch and draw. What I do is so cathartic to me in dealing with my health and helping me process the body changes and emotional struggle of my life. It also helps me take better care of myself. Find something that invokes your passion and do it. Find good workarounds based on your body and abilities and just do what makes you happy. That can be jewelry making, flower arranging, quilting, knitting, photography, music, or more.
Working through the emotional and mental cloud that surrounds being a chronic illness patient opens you up to better listen to your body and be a better version of yourself. Art clears my mind and clarifies my body signals.
Remember to Value Yourself
Your needs and wants are just as valid and important as those of the people around you. Too often we ignore ourselves to make others happy. But if we take some simple steps to protect ourselves and practice good self-care then we become more able to function properly, get more done than we did before, and be better able to handle the ups and downs of our daily lives.
Jennifer Walker is a patient who creates art to express her chronic illness life and mental health struggles. You can follow her on Instagram/Facebook as @UnexpectedAdvocate and on Twitter as @UnxpctdAdvocate. Her artwork is for sale on Etsy under the shop name of 522artNdesign.