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.

Why This Hospital Photo Is Bravery At Its Finest

In the summer of this year, I experienced a migraine that lasted two months, vision loss in one eye, and endless vomiting with no answers every time I ended up in the ER. I tried everything to rid my migraine and went so far as to get a painful daith piercing, but nothing helped. In October, I experienced the same symptoms that drew me to the hospital once again, except this time, they found five brain lesions and an inflamed optic nerve that’s caused me to become half-blind. I was diagnosed with a rare disease called NMO that requires infusions every two weeks to prevent another relapse.

It’s taken everything in me to get up in the morning. Work has become an endless struggle. I’m supposed to be the strong one, but right now, I feel like a failure – a disappointment in so many areas of my life.

Then I saw a photo of a little girl in the hospital on Twitter that stunned me. Her name is Akane, and she was diagnosed with NMO in November of 2018. She’s lost vision in one eye and she has to have monthly infusions as her treatment. It broke my heart that such a young girl is going through exactly the same thing I am as an adult and yet – she’s smiling.

She is the epitome of bravery in its finest form.

Akane didn’t ask to be sick. Like so many other children diagnosed with an incurable illness, the time they spend in hospitals should be time spent running outside without a care in the world. They should be role-playing make-believe nurses taking care of sick dolls instead of being a sick patient themselves. Life isn’t fair sometimes, but Akane is showing us that though life throws curveballs, we can still be grateful.

Through Akane’s bravery, we too can smile in our pain. We can be brave like her.

Despite the pain that I know Akane is going through because I’m breathing it right now, her smile is teaching me that I don’t have to focus on my pain because I have it. I can ask for some sonic and a board game on my next hospital visit and be content that I’ll have someone to play with. Whether it’s my husband, friend, or mother-in-law, someone always shows up because no matter what, I’m loved. I’m loved like Akane is loved by her mother, Crystal. We have people with us, holding our hand through scary times, and this is what matters- not doing this alone.

It doesn’t matter how bad the pain we are feeling is, as long as we can still feel the love of those that love us, we will survive that pain, again and again. 

Though life threw me a curveball, I can still be grateful I have my husband who keeps me warm at night, a job that pays the hospital bills, friends that have been there for me, my twin who never fails to make me laugh, and a house to come home to.

As this year ends, despite being sick with a scary, unpredictable diagnosis that has changed a lot in my life, I will be OK because Akane is OK. And if a seven-year-old can be OK in her diagnosis, so can I.

If I know anything about what bravery is, it’s because of Akane.

*Photograph for this article is used with permission from Akane’s parent.

*Donate to help find a cure for NMO at the Sumaira Foundation for NMO here.