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.

Anxiety Is Real

The shame long associated with anxiety and panic attacks is felt partly because of the stigma against mental health. We’re attacked for being strong and opening up about it publicly and defiantly. And most people will tell us to get out of our heads—that it’s all mental. While there may be some truth in this, it’s a very difficult thing to control.

In October of last year, I was diagnosed with Devic’s disease (NMO) and it can cause me to become blind or paralyzed at any given moment. It’s a neurological disease that affects my central nervous system, and it’s caused me to become half-blind at 29. I was ordered to start chemotherapy treatment immediately to prevent disability.

Anxiety filled my lungs.

Anxiety attacks are daunting. I’ve experienced a handful since I was diagnosed because I suffer from accepting that this is my reality—that this is even a battle I have to fight so early in life.

One day in January, I was sitting at my computer attempting to feel normal by burying myself in work. When my body and blind eye started to groan in pain, I grew exhausted of the constant struggle. I began to weep which turned into a state of panic. I fell to the floor shaking, somehow able to text my administrator what I was experiencing. By the time I opened my eyes, she was by my side helping me to deep breathe. My husband came to pick me up, and I kept repeating this isn’t normal as tears ran down my face on the way home.

I became bitter.

I became indignant. I lost all sympathy for people complaining about Yoga class being canceled or that their favorite Starbucks drink was no longer served. I wished with envy that their problems were my problems instead of dealing with what I was going through. I was sad and frustrated, and I took a lot of it out on my husband.

It’s taken six months to get back on my feet. I’ve accepted this is my reality; the biweekly infusions, vacation accommodations, and an unpredictable future. I’ve accepted that no one understands what I’m going through unless they’re walking through similar shoes. I’ve let go of bitterness and replaced it with content. I’ve used this time off from work to regain my strength physically, mentally, and spiritually. And come the Fall, I will teach again.

Despite that I am physically better now, I still struggle with anxiety. This disease wrecked every part of my life in a span of three months. I could barely walk without a limp or stand for a long period of time without my legs shaking. I was swollen from head to toe, gained weight, suffered from severe nerve pain, eye pain, and month-long migraines. I fell once. I had to quit my job just three months after my diagnosis in February of this year.

I couldn’t believe that everything I worked so hard for was ripped out of my hands. My career and any chance for normalcy—gone. I was no longer independent. I was incapable of getting out of a bath without my husband’s help. Getting in and out of bed felt like a chore. I was unable to cook, clean, or even shower without pain.

Fear of the unknown prompted a lot of my anxiety. An anxiety attack feels like an elephant is sitting on my chest followed by hyperventilating. Controlling my breathing and thoughts become impossible.

I dread the thought of going blind every day—that at any moment, I could lose the beauty of a sunrise and the wonders of moonlight.

When I became half-blind, half of my world felt suddenly gone. It feels like I have one chance left, that if I have another relapse, everything will change in a matter of seconds, and my world will be dark. Just because someone looks strong on the outside, doesn’t mean they aren’t suffering mentally.

Anxiety happens when we feel like we’ve lost control. It happens when we feel like we don’t have everything figured out. It happens when we get a horrible diagnosis or when we’ve lost a job. It happens when we’re in physical, emotional, or spiritual pain. It happens even with no significant threat. And it can happen to any of us.

Maybe my anxiety happens because I’m trying too hard to play God in my own life.

I don’t have all the answers, and I can’t say I will never experience another anxiety attack in my life given my rare circumstances, but I do know that I believe in God, and he tells me that my heart and mind will make plans, but that his purpose will stand (Proverbs 19:21).

Not everyone’s anxiety is the same. Everyone’s suffering is different, but it’s still important and it matters. I wish I could tell you if you’re someone who got a medical diagnosis that it doesn’t have power, but that would be a lie. It does have power—it changes our lives forever.

Sometimes, we get so far in our thoughts that for a moment we forget we’re actually surviving the anxiety attack. We forget that despite that we can feel our heart beating in our throat, our hearts are still beating, and our body is pushing through the attack for the promise that there is a better tomorrow.

And that deep down, despite our best efforts at self-care, deep breathing, and sound baths, the strong spirit in us that comes from above will overpower the weak.

We will overcome it.