The Words Every Chronic Illness Warrior Needs to Hear
You have every right to feel overwhelmed, as though no one understands. Maybe you feel like a burden, afraid of your future or even lost of all hope. As far as I know, everyone living with long-term illness understands these feelings well. I know I do.
Illness, pain and long-term struggling literally deprive the brain of the chemicals and hormones required to feel happy and at peace. It’s not pain or illness alone that causes depression, but the high levels of physical stress, constantly, over a long period of time which can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like serotonin, oxytocin and dopamine are no longer in balance to counter feelings like uselessness, loneliness, fear and hopelessness. What might have been a passing thought, thanks to the rigors of chronic illness, can become a spiraling pit of despair.
Pain wriggles into your very soul, and drains you of every resource.
This month is my 13-year anniversary with chronic pain (RSD/CRPS). When I became very ill six years ago, after several more illnesses struck suddenly, I felt as though I completely disappeared. Illness swallowed me up.
If anyone is reading this and is being swallowed up by sickness, then you know it’s the loneliest feeling in the world to watch everyone go on and live happy lives while you fight for your own life in the shadows. Being drowned by an invisible adversary can seem like a practical joke.
Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?
I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has hacked.
You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be.
You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom and you are learning valuable lessons from this battle that no one can ever take away from you. Please don’t accept the lie that you’re a failure; you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing.
If your daughter, son or grandparent were struggling with the very same condition as you, what would you want to tell them?
You can do this. Though you may be exhausted and fragile right now, and you aren’t even sure how you’ll go on another day, the pain might be pushing you over the edge of what you can bear… but somehow you have risen to meet every single day before this. Remember every sickening treatment, painful surgery and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today.
You are beautiful. Sometimes we lose touch with our bodies as protection from all of the horrors we are living through physically. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes… we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely and beautiful person. You are worthy of love. (P.S. It’s OK to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect – no one is.
You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror and isolating us from people we care for. Who we once were can float away, and illness can feel as though it’s taking us over. You are still her. You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s.
One last thing I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perceptions change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10 times more (10 times more) than we hear about people regaining health and wellness.
There is no doctor or article online that can assure you what tomorrow will hold. As much as your body and mind whisper terrifying words like “incurable, degenerative, progressive,” it’s easy to let that be your daily mantra, or you can make hope become your weapon of choice.
As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!
“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.” – Marion Zimmer Bradley
This post originally appeared on A Body of Hope.
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Mary is a bed blogger, pain patient advocate, and art therapy proponent. Fifteen years ago, she was diagnosed with CRPS at age 22. Mary now also lives (very quietly) with daily Intractable Migraine, Cluster Headache, the fainting disorder POTS, Dysautonomia, CFS/ME, Pseudo tumor cerebri, multiple sensitivities, sensory neuropathy, and CSF leaks. Though she lives her life from a horizontal position, she keeps herself busy. She began the hope-based Facebook support group Living with RSD, and the creative corner, Chronically Inspired. Mary is an online activist for health and human rights, and loves raising awareness for chronic illness issues on her blog, abodyofhope. She studied psychology and professional writing in college, and has been grateful to utilize her experience for projects in the chronic illness community. “HOPE is the most important aspect in surviving unspeakable pain and illness. It is what takes us from suffering to surviving.”
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