What I’ve Learned from Chronic Illness
Universal wisdom for those of us living with pain
I wake up bathed in sweat for the fourth night in a row, but this time is different. I can think, and despite the pounding in my head, my back doesn’t hurt so severely that I can’t sleep! In fact, I realize that I slept the whole night, which feels like a miracle.
I feel like getting up, I feel like a human again, and maybe this morning, I’ll even feel like I can drink coffee! But first: water. I meticulously drink 30 ounces of water, followed by a detox tea and Gatorade spaced out over two hours.
Finally, I’m back! I hug my son, husband, and three rescue dogs, grateful that I can bend down, and open up my computer to check my submissions queue as I do a few times per day.
Again I feel a sense of gratitude so deep and so profound that I’m almost moved to tears. Today’s the day! We will walk the dogs through the meadow beyond our house, marveling at tiny, green grasshoppers, delicately striped squirrels, and the mama robin in her nest, carefully perched so as not to crush her brilliant blue eggs.
Oh, the joy! I feel overwhelming appreciation for restored health, and a feeling like my old self again. I am supremely, magnificently, imperceptibly grateful.
The Chronic Pain Flare
It all started on Sunday night with uncontrollable vomiting, severe pain, fevers, and all-consuming malaise. It’s not COVID-19; I’ve had these flares a few times a year for almost 20 years. My liver even hurt. I took an uncharacteristic nap yesterday and briefly wondered if there was something wrong with me, something undiscovered, that was slowly killing me.
But really, it’s a gene mutation that inhibits my ability to purge toxins from my body, paired with slow gastric emptying, thyroid disorders, and chronic pain.
It’s a recipe for disaster, and if you struggle with a chronic illness, no matter the scope or severity, you may know what I’m talking about.
The Research
Current studies show that many people with chronic pain can be helped if they understand all the causes of pain and the many and varied steps that can be taken to undo what chronic pain has done. The outlook on treatment is optimistic.
Scientists believe that advances in neuroscience will lead to more and better treatments for chronic pain in the years to come. This is good news because studies also show that chronic pain is on the rise.
And a study by Medscape states that “The main outcome was the prevalence of chronic pain and high-impact chronic pain in 2016. Researchers also assessed sociodemographic factors that might affect the prevalence of pain. The study analysis estimated that 50.0 million US adults, or 20.4% of the total adult population, had chronic pain, and 8.0% of US adults.”
Chronic pain is getting attention in the medical field. And there are three additional studies of note, that focus on improving the outcomes for chronic pain patients. The MAPP Research Network, OPPERA Study, and PAIN Repository all seek to understand pain and, it’s effects on brain function and muscle health.
What I’ve Learned
Over the past decades, I’ve learned many things about managing and coming back from significant illnesses.
If you’re one of the millions of people in the world struggling with any health crisis, I hope that this helps you too, my friend.
And even if you don’t suffer from an invisible illness, I hope that these lessons can light up your soul and bring you great peace.
Advocacy
1. I’ve learned that becoming your own advocate is powerful.
I searched for answers from the Western medical community for a decade before coming up with my own protocol.
And now I’m happy to say that I’ve become stronger like a person must when faced with an onslaught of invisible illnesses. No one had answers for me, so I read medical manuals and studies, and conducted my own “clinical supplement and physical therapy” trials, to figure out what worked for me and what would enable me to have a good life despite the illnesses. Now, if I visit a doctor’s office, I’m armed with so much research that it baffles the practitioners. I know what I want, what I need, what works for me, and I’m not afraid to ask for it. If the doctors get stern, I get sterner, while still being kind. I will no longer be a victim of the medical system. And here’s the thing: once I started powerfully advocating for myself, the doctors began treating me with more respect instead of looking at me like a broken woman or, even worse, a drug seeker! I figured out what worked for me, how often I needed physical therapy, usually once a year for one month, and what calmed the flares vs. aggravated them. I did it, and so can you. Really, you can.
Saying “No”
2. I learned to say “no” to certain obligations.
I stopped forcing myself to commute for several hours just to spend my day in extremely high-stress environments. Sure, I made a lot of sacrifices; I don’t buy new clothes, or visit the salon, but let me tell you, my friend, that it was so incredibly worth it.
Who needs fancy things when you’re slowly killing yourself? Who needs a new car when you can’t even drive? I’d rather spend my money on healing, food, and life-sustaining physical therapy. I also learned not to feel a deep sense of shame for continually canceling plans with friends who often don’t understand what it means to have a “bad pain day.” I learned that my friends who deserted me in my darkest hours were never friends, in the truest sense.
It made me sad and shameful for a long time, but no more. It was not my fault, and since then, I’ve sought and found friends who support me no matter what. And if you’re going through the same thing, please know that it’s not your fault either, and that you deserve to be surrounded by a loving, magnanimous tribe. Friends who understand have compassion and know that sometimes I’m unable to participate in the ever-flowing river of shared life. They understand that sometimes I need to retreat to heal. I’ve found them, and so can you.
Internal Strength
3. I’ve learned to lean into my internal strength.
I’ve become stronger than multiple chronic illnesses. I’ve learned to rise up, to take my power back. I did it by not giving up, and by learning, albeit painfully, that I needed to work on my mental and emotional health, which had been ravaged by chronic illness for several years. No matter your struggle, no matter your pain, whether mental, physical, spiritual, or emotional, you can do this. And even if you are blessed with good health, you can do this, too. I sought out counseling, and I grieved my losses, such as conventional exercise and taking long trips.
I made modifications to my life, and learned that physical therapy would help me do the things that I loved. Now I can travel occasionally, and do bi-weekly exercises that stress my body and spirit much less. There is no shame in any of this. We are all worth the utmost loving care, and it’s up to us to show it to ourselves, when the world continually throws barbs, telling us that we are flawed, not enough, or “diseased and disabled.”
Spiritual Connection
4. I’ve learned to connect with spirit.
In the earliest, darkest days of my chronic illness, when it first blindsided me, the only thing that kept me going was a prayer and affirmation book. I would say the prayers and affirmations with my whole heart, multiple times a day, and this was my saving grace. I found support and love in spirit when I had little anywhere else, even for myself. I did this for two years when I couldn’t work and even thought about going on disability, and eventually, I was able to return to work part-time. No matter your belief, no matter your stance on all things spiritual, you can do this, too. Look for what brings you an overwhelming sense of peace, and what helps you get through the toughest times. Seek it out, my friend, and never stop seeking. Like the continual river of experience, things flow in and out of our lives, and they can change us for the better if we let them.
Love is Paramount
5. We are all love. Let me shout it from the rooftops: We are love!
The most powerful thing that I’ve learned I that life, in all of its glory, beauty, pain, joys, and challenges, serves to teach us one thing, and that one all-powerful consuming thing is love. Be still, dear ones, and know that you, too, can overcome, persevere, and recognize in the corner and depths of your being that you are enough. With much radiating love, Aurora
