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.

To The Teachers Of The World — This Is What Matters In The End

As a virus spreads in our world and takes us into uncharted waters, shutting down schools and universities, we have to learn new coping mechanisms, new ways of thinking — and new ways of learning.

Teachers across the world are learning what it means to remote teach. The stress was felt globally putting together last minute packets, Google classrooms, all the while trying to answer questions from students and anxious phone calls from parents.

Teachers are worried. Parents are tired. Administrators are trying.

Teachers are perturbed about regression. Special ed teachers are concerned about high risk students and how they’re coping all the while trying to manage accommodations virtually. Every single teacher, school counselor, nurse, and administrator have no idea what to expect upon the return of school — or even when that will happen.

Students are missing out on memories we all hope they will get the chance to have while proms are cancelled, high school graduations are post poned, and university students dreams feel halted.

Students everywhere are missing their friendships, teachers, and schools. Teachers and school professionals across the world want to be back in the classroom with their students, and it’s a loss that is felt in every teachers heart. But this won’t stop teachers from showing up, because if there’s one thing teachers can never fail at — it’s being there for students even in the hardest of times.

Stress can bring out the worst in people. And while teachers are coping with grades, tests, and daily assignments, there’s one thing that will matter more than anything after all of this is over:

Student’s mental health will be more important than their academic skills.

How our students will feel by the time this is over will impact their lives more than having not finished the essay on a book assignment. They need to feel safe, loved, and supported through these times where they are witnessing high stress.

Though students should definitely try their best, we have to remember parents are also doing their best while remote working and taking care of their family full-time. Students can’t raise their hand and expect immediate help from their teachers anymore, so naturally there’s going to be frustration. There’s going to be incomplete assignments. There’s going to be a lot of tears, melt-downs, regression, and complete start-overs — but it will take ten times as much work re-building our students mental health and also our own during these trying times if we don’t keep perspective.

Every single one of our mental health matters. It doesn’t vanish because of a pandemic. Everyone is more fragile. So, if you’re in the field of education and are responsible for the learning of others, be kind to yourself. Give grace to your students. Be patient with parents.

We’re all trying our best in this, and we’re all in this together.