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.

Leaving My Job Was The Hardest Decision Since My Diagnosis

Teaching is my calling. I’ll never forget my years as a paraprofessional because I always wanted to be the teacher. Each teacher inspired me in different ways and in August of 2018, I finally became a special ed teacher. I always saw the possibilities of students with disabilities. They are my heart and soul and I will spend my life showcasing their strengths, not their deficits.

My first year of teaching was amazing. I thrived under pressure and loved every second of it until May came around – and I started throwing up.

My first summer off as a teacher was hell. I pictured myself bathing in the hot sun enjoying my fair share of piña coladas and instead I spent most of the summer in cold ER rooms with confused doctors. I had a severe migraine the entire summer, couldn’t eat or see in one eye and spent the majority of my time throwing up or crying. Most teachers don’t want summer to end, but I couldn’t wait for it to be over. When August 2019 started, I threw up for a week and in September, I was symptom-free eager to teach my second year and put the roller-coaster months behind me.

The roller coaster wasn’t over. When mid-October rolled around, I experienced a month-long migraine, went half-blind again, and ended up in the hospital for a week. I was finally diagnosed with Devic’s disease (or NMO) after my MRI scans showed lesions of the brain, severe inflammation behind my eye, and positive blood results. NMO mainly affects the spinal cord and the optic nerves – the nerves that carry signals from the eyes to the brain. As a result, the disease can cause paralysis and blindness.

Though enduring this disease is truly one of the most difficult and painful things I’ve ever faced, sometimes pain isn’t always the worst part about chronic-illness.

My illness has left me feeling inadequate as a teacher. The time I missed from work was time stolen with my students that I’ll never get back. I started to forget my students laugh and missed the warmth their hugs brought to my heart.

I started a chemotherapy treatment called Soliris and though it has prevented another attack, it has made me weak no matter how much I’ve changed my nutrition. I felt horrible day after day by how much time I missed and not being there for my students. So with a broken heart, I had to say goodbye to them and a school that became instant family.

They became the kind of family that when I had a mental breakdown nearing a panic attack on the floor of my classroom, my assistant principal was by my side in a minute holding my hand trying to get me to deep breathe. It was those moments that kept me holding on until the end.

The thing about being a teacher with a chronic-illness is that you have to learn when you’ve done your part, and when it’s time for someone else to step in to give your students the best education possible.

There comes a point when you realize your students deserve better than what they’re getting from you no matter how much you will miss them. Yes, I miss their smiles, their questions, their struggles and their aha moments. Every time I packed up something in my classroom, my heart stung. My student’s tears became my tears, and those last few days wrecked me. I pray the next teacher sees just how unique and wonderful each of them are.

I know I can’t control what this disease does to me, the side effects from treatment, or the fact that I am visually impaired, but deep down, I know I can give so much more and this is why I left. Right now, I’m in the thick of this disease figuring out what works and what doesn’t – and I need to rest. For now, I’ll sub in the district I live in on the days I feel strong and rest on the days I can’t, and hope for disability benefits.

I’ll continue to trust in God’s timing and when he thinks I’m strong enough to have my own classroom again. The prior hour drive weakened me before I even made it to work. I dragged daily, barely able to pull one foot in front of the other and it showed. Feeling embarrassment while walking the hallways was inevitable.

And so, I will wait. I will heal. I will be strong for the students in my future because they will deserve no less.

I know color will come soon where there is a whole lot of grey.

I know I will be Mrs. Wall again.