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.

What It Feels Like Being Immunocompromised During The Coronavirus

Our nation is in a public health crisis and some people are at a higher risk for serious complications than others, like the immunocompromised and elderly.

Very common chronic conditions that compromise the immune system are heart disease, lupus, diabetes, and lung disease. Not so common diseases that also compromise the immune system are cancer and rare diseases that involve a form of chemotherapy or steroids, which can lower immunity by destroying immune cells or affecting their ability to spot bacteria and kill it.

My immune system hasn’t functioned properly since I was diagnosed with lupus in 2013, and now, a rare disease that attacks my central nervous system. My treatment includes bi-weekly chemotherapy infusions that suppress my immune system’s ability to fight off infections.

To be someone with a chronic illness and a compromised immune system during the spread of coronavirus is alarming. We and the elderly are at the most risk of dying. Call it dramatic or what you will, but it’s not a laughing matter anymore. There are over 5,800 deaths due to coronavirus, and it’s growing on the hour. Just refresh this page of COVID-19 statistics and you’ll feel the sobering effect I did when the number of deaths rises in two minutes.

Statistics are also showing that people with pre-existing health conditions are at a higher risk of death. Most of these health issues involve patients with suppressed immune systems due to treatment or the disease in general. The elderly and people with health conditions cannot handle the virus in a way a healthy human being can.

People, political leaders, or social influencers who are telling people not to panic unless you’re in the vulnerable or elderly category, are not taking into consideration our worry or feelings as sick people.

People who think getting this disease is cool (article here) because they had a mild form of the virus, clearly aren’t thinking about those of us who it will not be so cool for.

No one’s talking about how to protect the immunocompromised, and no one is giving limits in stores to people who are hoarding all of the things that would make those of us who are at the higher risk of dying – feel safe.

I’m a part of the estimated 9 million immunocompromised people in the U.S. I think it’s safe to say, we’re trying not to panic, but we really are relying on the non-sick community’s eagerness to follow the CDC’s recommendations.

Maybe if you’re not at a higher risk of dying, try asking a sick friend if they have what they need. Be there for them, even if it means mailing something.

Healthy people have a low risk of dying and a high risk of transmitting the virus. I understand everyone’s need to want to protect themselves. Trust me. But in that need, please don’t forget that there are people who are statistically at a higher risk of dying than you are. Instead of taking ten bottles of disinfectant wipes, maybe try refraining to two, so that the chronically ill person that goes to the store can get at least onelike me.

I know this pandemic is crazy, scary, and unpredictable while schools and universities shut down and flights are turned around mid-air, but let’s not forget to be there for each other in a time when it’s tempting not to be.