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There is a lot that no one tells you about chronic illness. If you love someone living with a chronic illness, odds are they have felt emotions they will never share with you. Chronic illness is incredibly isolating. Despite having an incredible support system, I still find chronic illness to be permeated by loneliness. It disconnects you from everyone you love on some level. There is so much that able-bodied people do not understand, and that we are too fragile to share.

Before coming to terms with my chronic illness, I was still unaware of how much living with a chronic illness changes one’s life. I was still fighting thoughts of worthlessness and isolation, and that fight was exhausting.

When I was first diagnosed with Endometriosis (among other things), I fought to maintain my “normal” life. I quickly realized that my life was not going to stay the same. At first, I felt very alone. It wasn’t until reaching out to other chronic illness warriors that I realized our stories share a lot of similarities.

I learned a lot by scrolling through chronic illness social media, educating myself, and having honest discussions with other people living with chronic illness. After lots of talks with chronically ill friends, I realized a lot of us live a double life. Afraid of saying too much at the wrong time, I have bitten my tongue more times than I can count. There are endless ableist comments I ignore throughout the day or barriers I face due to inaccessibility. Beyond all of that, there is a feeling that the people I love the most do not know the real me.

Beyond all of that, there is a feeling that the people I love the most do not know the real me.

There are a million things I wish I could tell you about chronic illness. There are moments I crawl through my house, sobbing in pain; that I was at my sickest in this photo, only 80 pounds and in immense pain; all the days spent burrowing my tearstained face in my cat’s fur; making true friends that send you care packages; anxiously wringing my hands because I am alone in the doctor’s waiting room; a million little moments that truly characterizes chronic illness. Instead, I’ll share a few.

I can’t remember the last time I had a night out on the town.

COVID-19 aside, I don’t remember the last time I went out partying, or to a bar, or even bowling with a friend. I don’t miss the flashing lights, loud music, and copious amounts of alcohol. All of those things only exacerbated my chronic illness.

At 23, the person who stumbled between house parties in college seems like a completely different person. Back then, I would suffer through the migraines and nausea alcohol brought on and hit the dance floor. As the years went on, I stopped being the life of the party. I was the person who puked in the bushes on the way to the party. I sat in the corner with my bag, waiting for the moment I could go home. Eventually, I had all but disappeared from the party scene.

After a while, people stopped inviting me out at all.

When I am home alone, I scream in agony every time I use the bathroom.

The truth is, no matter how unsexy it is, every time I have to pass a bowel movement, I scream bloody murder. My cats barge into the bathroom to stare at me, wide-eyed and concerned.

I won’t go into detail, but any bathroom activities, besides baths, are hell on Earth. The worst part of my day is bathroom time, and my chronic illness makes me spend a good chunk of my day hanging out there. Name a worse pairing, I’ll wait.

I am in pain all the time.

Yes, even when I wake up.

Yes, even when I am out to lunch.

Yes, even at work.

Even while I am laughing.

Even while I am doing chores.

Even right now.

I deal with debilitating chronic pain for a good portion of the month. I have more bad days than manageable days, and more manageable days than good days, if I am lucky enough to have good days. People seem to grasp that I deal with mind-boggling pain. The part of my symptoms people have a hard time understanding is that I am always in pain. The last time my pain was under a 4 out of 10 on the pain scale was years and years ago. I would kill for most days to be below a 6.

I would kill for most days to be below a 6 on the pain scale. I have had to learn to function on bad days, on days that would send most people to the hospital. I don’t say that to brag — that would be the worst brag ever, right? “I’m homebound several days of the month and in total agony right now!!” does not sound like anything to be excited about.

In reality, my baseline of pain is between 5–7 out of 10. I have to work, socialize, do chores, grocery shop, and live my life in substantial pain. Part of being in constant pain is that, at some point, you stop talking about certain types of pain. The mild stabbing that is a constant in my lower abdomen? Don’t mention it! The burning in my legs from a walk around the block? Not a problem!

If I decide to mention my pain, then the pain is extreme. I bring up my pain when it creeps into dysfunction. When I am afraid I will faint from pain, I speak up. I bring up my pain when it is a 9 out of 10 and I can hardly even speak or think of anything else.

If you love someone with chronic pain, remember that there is never a moment they truly escape the pain.

Chronic illness is a second job (and it is full time).

To pay for my full-time chronic illness, there is an affiliate link in this section.

The doctor’s appointments, physical therapy, self-care, calls with insurance companies, specialist visits, therapy, and more… These tasks take up a good portion of my time. There are so many balls to juggle when it comes to chronic illness that I have to multitask constantly. There is a running joke that chronic illness is a full-time job with no benefits, no time off and no paid breaks; you spent more money than you could ever make.

On hold trying to get prior authorization? Time to get in a quick stretch!
Sitting at my desk typing away? An opportunity to use my TENS unit to get some pain relief.

On my way to the grocery store? The perfect time to listen to an in-depth podcast explaining the relationship between my illness and hormone receptors.

No matter what I am doing, I am thinking about my chronic illness. I have to; it is a means of survival for me.

I am constantly calculating how much energy I have, which foods will hurt me, and so much more. Chronic illness eats up time, costs me a pretty penny, and sucks up all my energy. Those of us with chronic illnesses are often expected to work full time like everyone else, keep up with mundane human things like showering and chores, and manage our illnesses. There simply isn’t enough time or energy on any given day.

My pets are truly my best friends.

I love my human best friend. She’s fantastic and does everything she can to make my life better, chronic illness or not. She is incredibly thoughtful and compassionate and gives me all the grace I need without abandoning me.
She’s still not my cat.

I got my first cat almost 4 years ago when my health hit a very sharp decline. Since then, I have fostered 8 total and have three of my own; that’s how powerful they are. Pets can be so beneficial to people with chronic illnesses.

Watching them scale the cat tree or cackle at a bird through the window is a welcome distraction from my day.

They keep me from feeling alone whenever my partner is at work.

They are a stand-in for the family I might not be able to have.

Their fur is the perfect texture for self-soothing exercises.

Owning a cat even comes with health benefits, including aiding in sleep and lowering the risk of heart disease.

We do not want any advice.

I mean, absolutely none. No unsolicited medical advice is welcomed by any able-bodied person.

I know what you’re thinking: but what if I mean well?

Doesn’t matter. There is no world where your unsolicited medical advice is welcomed by anyone from the chronic illness community. When people share unsolicited medical advice, it feels like a slap in the face.

Chronically ill people have usually tried every tip, trick, or suggestion in the book, natural and pharmaceutical. When we get suggestions on what to try, it feels like the person doesn’t trust we have done everything in our power to get better. When we get suggestions on what to try, it feels like the person doesn’t trust we have done everything in our power to get better.

I promise you, we have probably tried it all, most of the time to no avail.
I have tried celery juice, birth control, yoga, hormones, CBD oil, pregnancy, surgery, supplements, Chinese herbs, and countless other “treatments.” Most of the time, the only place those so-called “treatments” affected was my wallet. When they really are helpful, I use them religiously.

Next time you want to suggest a treatment, symptom management, or “cure” to someone with a chronic illness, ask yourself “Would the Medical Medium suggest this?” If the answer is maybe, keep it to yourself.

Time spent at home is not a “vacation.”

I would be able to afford all my medical expenses and still be a billionaire if I had a dollar for every time someone mentioned how lucky I am to be able to stay home all day. Whenever anyone is jealous of my work from home life, I want to ask them if they think having a chronic illness is some luxurious vacation.

A typical day on the “vacation” that is my life with a chronic illness is not something I think anyone would be truly envious of. I get up well before the sun because my pain usually isn’t raging before midday.

I grind through as much work as I can before my body becomes a forest fire. Then I take a bath so hot that immediately my skin turns bright red and the sweat begins to pour from my forehead. After the water turns cold, I return to my computer and fight through the last few pitches of the day. I am unbelievably thankful when all my tasks are checked off and I can collapse back into a scalding bath.

While it might sound like I spend my life in a jacuzzi, I promise you I would much rather a vacation from my body.

Living with a chronic illness is a difficult full-time job. Most of us are too exhausted to point out everyday ableism, or we are too afraid we will scare off those we love. I don’t want pity or advice. I want someone who will sit with me through all of the loneliness, who will invite me places and make sure said places are accessible, a friend who doesn’t mind sitting on the couch with my cats binge-watching TV with me.

I want someone to listen when I tell them about living with a chronic illness.