Why Chronic-Illness Feels Lonely Despite That You’re Not The Only One Battling It

According to the National Health Council, there are over 150 million Americans living with chronic diseases with around 80 million having multiple conditions.

But despite the fact that there are many people living with a chronic illness, it feels very lonely.

I’ve suffered from 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 suffering 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 that 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 suffering during the day only to swim upstream all over again come the morning. But to tell that to someone that 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 that get it—with people that are fighting the exact same battle we are. Whether we’re fighting a rare disease or a 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 suffering 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 crippling 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 that 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.

If You Think You’re Tired of Listening to People Talk About Their Chronic Pain, Imagine How Tired They Are of Living With It

Chronic pain affects more than 1.5 billion humans worldwide so the chances that you’ve heard someone talk about their pain is pretty likely. However, if this is your first time hearing about chronic pain, you’ll probably understand it more after reading this.

Chronic pain feels like you’re wearing a 100-pound coat filled with random pricks of cacti. Depending on the kind of chronic pain one is dealing with, it’s likely invisible, which means a lot of people can’t comprehend how someone can feel like this all the time.

I was 21 years old when I was diagnosed with systemic lupus. It’s been seven years now and if you know chronic illness — you know how tired we are of living with it.

I remember the day after I was diagnosed, I needed to go to the grocery store for milk. It was a cold morning in Colorado Springs and as if I wasn’t stiff already, I had worn three layers that made my movement robotic. I remember waiting for the area where the milk was to be clear of people in case I did something embarrassing. Well, as my life would have it, I grabbed the milk carton with my wrists and it slipped down and bounced on the floor. What was more embarrassing was trying to pick it up. Good Lord…it felt like bobbing for apples. All of a sudden I wished I hadn’t worn three layers of clothes as it only made me sweat more. A woman my age came around and picked it up for me (after she must have witnessed how ridiculous I looked). I made a weird, awkward laugh and muttered something like, “Sorry, ha-ha, condensation.” She replied with something along the lines of, “We all do it,” and then she was gone.
I starred at the milk carton in my basket and then at the girl as she walked away. I felt like I had egg on my face — so awkward and embarrassed. I stood there staring at my swollen, rosy hands wondering what my life was going to look like if I couldn’t pick up a carton of milk at 21 years old.

As time went on, the inevitable began. Pouring coffee was a struggle, brushing my teeth became a chore and brushing my hair was never going to happen.

My new normal was greeted by chronic pain in the mornings and kissed goodnight by never-ending tears. I knew I needed to accept the pain but I still couldn’t understand why my body was failing me.

My body continued to fail me throughout the years as I got sick with hypothyroidism, gastritis, migraine, and depression. And as much as I love the cold weather of October, this month has been especially piercing (and still painful) after I was diagnosed with Devic’s disease. They discovered I have optic neuritis and five brain lesions. I couldn’t say why pain likes to torture me. Why, if I’m not vomiting every day from gastritis for a week, I’m flaring in my knees or walking around half-blind with head pain for a month with sleep being my only relief. Why every second of every minute of the day I think about what it used to feel like to not feel a damn thing. And I look at the girl at the grocery store that has that extra pep in her step and I can’t help but feel an ache for normalcy.

I wish people would understand that chronic pain is a disease. It’s pain that requires lifelong management and it’s not cured by a magic pill or magical green tea matcha. People who suffer from chronic illness, or any disease for that matter, didn’t do it to themselves by what they ate or didn’t eat. Think about that before you blame a human being going through their own never-ending pain. Pain is pain and human life is human life. You can do all the right things and eat all the right things, but you won’t escape pain. It meets every one of us at some point in our lives.

Maybe if we tried to listen before we judged, we’d have a lot more people feeling less lonely in their pain.

I’d say I’m an extremely empathetic person toward chronic pain because I’ve been through the lonely part. You don’t even have to explain yourself to me — I just get it — and I’m sorry. I know you miss a thousand and one things and I wish I could tell you every broken part of you will be normal again, but I just don’t have the words. So, I’m going to tell you about the morning I drove to work and heard the Japanese legend of Kintsugi on 90.9 KCBI-FM.

According to legend, a Japanese shogun named Ashikaga Yoshimasa sent a cracked tea bowl back to China for repairs. However, upon its return, he was dismayed that it had been put back together with hideous metal staples and thus, Kintsugi was born. The tea bowl was put back together with golden glue and Yoshimasa found that it was even more beautiful after it had been broken and glued back together than it was before.

Kintsugi is related to the Japanese philosophy of Wabi-Sabi, which calls for seeing the beauty in the imperfect and also mushin, the acceptance of change. I know it doesn’t feel like it now, but as your pain breaks you — cracks you in every way — you’re changing into something new. You are your very own Kintsugi masterpiece.

So, to the people who don’t suffer from chronic illness, the next time you have the urge to give your opinion on chronic pain or perhaps roll your eyes at the person who takes a handi-cap spot even though they’re walking with two legs, remember that not all pain looks the same. Remember that they’re a human being suffering from a silent, invisible illness that you’re lucky you don’t have—and I hope you never have.


Remember that though you’re probably tired of hearing about people’s chronic pain, they’re undoubtedly more tired of living with it.

What if you were the golden glue that mended someone’s brokeness from chronic pain? That makes you part of the beautiful; a part of Kintsugi—a part of the change.

Don’t be a staple.