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.

Dear Teacher: You’re Not Wrong For Going Home

I know you’re finishing up your lesson plan in your classroom right now at six o’clock in the evening drinking whatever stale coffee you have left in your morning mug—I’ve been there.

But if there’s one thing I’ve learned from staying late at work, it’s that whatever I was working on could have been done the next day or the next week.

As teachers, we’re always trying to get ahead. We always feel like we can give more, do more, be more. But I’ll bet if you’re reading this, you already are.

The thing is, work will always be there. So go home. Go home to your family, your spouse, your children, or whomever your loved ones are at home and be with them.

Truly be with them; make memories and stop working. Yes, I have to swallow this pill every time I leave work and hope that it does its job on the road home. My husband reminds me of this every time I pick up my laptop to start writing IEP’s or my next lesson plan. Don’t get me wrong. I wholeheartedly believe in completing deadlines, but everything else can wait.

Statistics say teachers work an average 50 hours a week and we keep working over 400 hours of overtime a year. At the beginning of the school year, I stayed late at work for almost four months and kept working until nine o’clock at home. The time I was missing with my husband grew on me especially the weight I took home. My go-to spot on the couch was no longer my unwinding place with a glass of wine snuggling up to my husband, but one where I’d snack on a PB & J while my laptop kept my legs warm.

Doing this inordinately drained me. I had no spirit to give my eighteen non-biological kids day after day. This became a chronic problem because my students deserve first class and I wasn’t giving them that. I needed to take care of myself by giving time to all the wonderful things that once nourished me. I needed to feel my husbands hugs and hear the laughter that springs from family gatherings again. I needed to taste the goodness that comes from a fresh glass of wine while soaking myself in a hot lavender bath. I needed to be in nature and feel the sun’s kiss on my skin and see the beauty that comes from blooming trees. I needed to be with my friends and catch up on life. I needed to pray and be OK with not doing anything.

I need to do my life; all that it is when I’m not teaching. I absolutely love my students and what I do as a teacher, but it is not my whole life—so I choose not to give my work all of my time. I choose balance; giving myself to all the different things I love in life.

I realized the work I stayed late to do wasn’t due the next day. I had made up my own rules to make myself feel better in the moment not sensing the taxing impact it was having on my loved ones or myself.

So, my dear teacher friend, you’re not a crummy teacher because you don’t stay late at work. We have one of the largest professions in the country with more than 3.1 million teachers, which means that much more people have your back on that. So go home and sip your cup of evening tea on your front porch and feel the warmth of sunset before dusk hits. It’s OK to choose home and be with your crazy humans before the moon rises. You see, we give our best to our students by giving them a well-rested healthy us—not we got three hours of sleep and ate a PB & J before bed us.

You deserve to go home and truly be home. Your people at home deserve it—and the on average 3,000 students you’ll affect in your career life do too.

You’re already an amazing teacher. It’s time to take care of yourself.

image by Rustic Vegan @ therusticvegan.com