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Living With a Chronic Illness Is Lonely, Even When I Know 'I'm Not Alone'

Last updated: 05-19-2020

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Living With a Chronic Illness Is Lonely, Even When I Know 'I'm Not Alone'

Living With a Chronic Illness Is Lonely, Even When I Know 'I'm Not Alone'
Editor's Note
Join The Mighty’s Spoonie Life Hacks group to get tips for tackling everyday tasks from people living with chronic illnesses — or to share your own hacks!
According to the the RAND Corporation , there are over 150 million Americans living with chronic diseases with around 100 million having multiple conditions. But despite the fact that there are many people living with a chronic illness , it feels very lonely.
I’ve lived with chronic pain since 2013 when I was diagnosed with  lupus . And in 2019, I was diagnosed with  neuromyelitis optica  ( NMO ), a rare disease that affects my central nervous system. They used to call it the sister to MS , but it’s entirely its own entity now. I know chronic pain well, and I don’t wish it on my worst enemy.
Before I started bi-weekly treatment for my rare disease , I often felt elderly but without the benefit of looking back on my younger years with pride. Instead, I would watch with envy the girl running on the sidewalk with all her strength and might. I would watch the young make memories they’d never forget, praying that I would get my chance again.
Chronic-illness is lonely.
It’s not that we don’t realize how many people are also struggling from an illness, it’s that in the perimeters of our daily lives, our friends and family, or our work places — we don’t seem to come across someone who relates with us — and so the people closest to us don’t understand what we’re going through, making us feel even lonelier .
We can try to explain the emotional and physical pain of a horrible diagnosis that changes our lives forever, but we usually say we’re fine time and time again, because no one will truly understand.
Chronic illness feels like you’re swimming upstream the moment you wake up. It feels like you’re sinking down in an ocean of struggles during the day only to swim upstream all over again come the morning. But to tell that to someone who doesn’t fight a disease daily also feels like an uphill battle. It becomes a matter if people believe our pain even when they can’t see it — while we are desperately and hesitantly walking on eggshells within our own body just to push to another day. And some people don’t care.
So we find comfort in our online communities with people who get it — with people who are fighting the exact same battle we are. Whether we’re fighting a rare disease or a more common disease, we find support from people we’ve never met and they feel like family.
What I’ve learned in battling chronic illness for eight years now is that some people are scared of understanding things they’re afraid of.
They’re scared to fully comprehend the pain you’re going through because deep down, knowing and understanding every inch of your pain and the fact that you’re struggling as much as you are is hard for them — because they love you. Though they will never understand your physical pain, it also takes a mental toll on their heart.
I remember when my spouse first heard of my diagnosis. It was a hard day for both of us. It was hard for me to see tears in his eyes when he was reading about my disease.
So, a lot of the time we hide our pain because we don’t want our loved ones to worry. But if they care and want to be there for us, we must open ourselves to the idea that maybe we don’t have to feel so alone after all.
My disease had full intention of seeing that I would lose all hope in my despair and never be able to jog with my full strength again, or get out of a hot bath on my own, or get out of bed without burning feet, or never see a day where I wasn’t throwing up in pain. But I have seen all of those things through today, and jogging with all of my might again is a feeling inexpressible.
Sometimes tough situations build strong people.
I’ve learned that it doesn’t matter how bad the pain we are feeling is, either physical or mental, as long as we can still feel the love of those that love us, we will survive that pain, over and over again.
Chronic-illness is lonely, yes. You will fight for your health every day. People will call you lazy or dramatic. People will give their homeopathic advice, but an arnica mountain daisy isn’t going to cure your disease. People will make you feel the most lonely you’ve ever felt in your life. But here you are — living despite the battle of not only your disease but of people who don’t understand what you’re going through.
Your pain is real. Your loneliness is real. But you will make it through this, and you will be stronger. I am here for you, and so are the millions of others who get exactly what you’re going through.
You’re not alone.
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Join The Mighty’s Spoonie Life Hacks group to get tips for tackling everyday tasks from people living with chronic illnesses — or to share your own hacks!
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Getty image via nadia_bormotova


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