What you’re not seeing–Understanding Someone Living With Chronic Illness | Coping with life-altering events and chronic illness support.

What does it feel like to live inside Chronic Illness?

Honestly, I am just tired. Because the thing about chronic illness that is so hard to explain is that there is no finish line. There is always something, and eventually, even coping becomes another thing you have to manage.

Before I became chronically ill, life had problems. The washing machine broke. The car wouldn’t start. Something in the house needed fixing. There was always something. But those things had an ending. You fixed the washing machine. You got the car running. You handled whatever needed handling. And then you moved on.

Chronic illness doesn’t work that way.

There is no point where you finally get everything under control and get to move on with your life. There is always something. It is relentless and it’s multifaceted. It isn’t just one thing happening to my body. It’s everything happening at once, in different ways, all the time. 

Something else people don’t always see. Chronic illness gets turned into something you are supposed to work your way out of. There is an entire world of advice built around the idea that if you can just try hard enough and find the right perspective, the right practice, the right way of thinking, maybe you can somehow get better or at least make peace with what your body is doing.

 I have tried and worked hard and you can read about this in the companion blog Sometimes I Don’t Cope and I Refuse to Make This Something Else I Have to Manage because it is not just about the trying.

Nothing is simple. Nothing.

It isn’t just one thing happening to my body. It’s everything happening at once, in different ways, all the time. I am constantly pushing myself. There is the pain. There is my brain. There are the medications, the exhaustion, the appointments, the bloodwork, the tests, the prescriptions and the insurance nightmare. There is also the people I love and want to be there for. Even the things that are supposed to help can become another thing to manage.

Everything has a cost.

So, I calculate. Constantly. How much can I do? What needs to be done? What do I want to do? What can wait? What will this cost me? All the time, I’m constantly making calculations other people don’t see.

I am constantly push myself

I push myself to do the basics of living that I didn’t even think about before. It takes effort to get out of bed. To shower. To get dressed. To make something to eat. To take care of the things that have to be taken care of. To leave the house. To see people. To do things I actually want to do.

If I shower, I will have to rest afterward.

If I sweep the kitchen floor, I’m going to pay for it.

If I take a walk, I won’t have the energy or capacity to do something else I wanted to do and I certainly won’t be sweeping the kitchen floor afterward.

Sometimes I push beyond what I know I should -not because I don’t know what my body is telling me, not because I’m refusing to accept reality, and not because I don’t understand my limitations. Not because it’s medically sensible. Not because I have enough energy in the bank and not because I’ve planned perfectly for the consequences.

Sometimes I want to do something because I’m still a person who wants to live. Sometimes I want to take a walk. Sometimes I want to do something simply because I want to and sometimes the floor needs to be swept and I don’t want to feel useless.

There is still a life and I want to live it, and sometimes living means doing something my body doesn’t particularly appreciate. I know there will be a price. I just sometimes decide that the thing is worth paying for and sometimes later I am sorry that I did.

I’m pushing myself because I am trying to live anyway. That doesn’t mean I don’t understand the consequences. Quite the opposite. I understand them very well.

There are alot of challenges that come with chronic illness, so lets talk about them.

The Pain

Pain is there every day, and I’m not talking about the kind of pain you get when you stub your toe, sleep wrong, or overdo it at the gym. I mean extreme pain. Deep, widespread, relentless pain. Pain that changes how I move. Pain that changes what I can do. Pain that makes me think about what something is going to cost me before I even decide whether to do it.

The Exhaustion

The exhaustion of living with chronic illness is different from being tired after a long day, a bad night’s sleep, or a busy week. This is not the ordinary kind of tired that a good night’s sleep or a quiet weekend can fix. This is exhaustion that settles into everything, the kind of exhaustion that can be there before the day even begins. It’s waking up tired, doing ordinary things and feeling depleted. Even rest doesn’t restore what has been depleted.

It’s having to think about how much energy everything will take, what you can manage today, and what you might pay for tomorrow and it isn’t just physical. There is also the mental exhaustion of constantly monitoring your body, making decisions, adjusting plans, and trying to figure out how to live within limits you never chose.

Sometimes I’m tired because my body needs rest. Sometimes I’m tired because I’ve been carrying too much emotionally. And sometimes I’m exhausted from spending so much of my life trying to function in a body that doesn’t cooperate. From the outside, you may see someone who looks fine, someone who got dressed, went out, laughed, or got something done. You don’t see the exhaustion underneath it, or what it took to make that ordinary moment possible. I’m not just tired from what I’ve done. I’m tired from what it takes to live this life.

And Then There’s My Brain 

Pain would be enough, but it isn’t just pain. There is the brain fog and it is more than just losing your train of thought in the middle of a sentence, it’s a loss that is difficult to explain to someone who hasn’t experienced it. Words disappear. I can know a word and still not be able to find it. I can know exactly what I want to say and suddenly have absolutely no idea what the thing is called. Sometimes I can’t remember how to pronounce something I’ve known for years. I know that I know it. It’s right there and it won’t come. There is something particularly frustrating about knowing what your brain is capable of, because you’ve done it before.

The People I Love

The people I love still need me, I want to show up for them. I want to give them more attention and more energy and more of myself. But sometimes there simply isn’t more of me left and that doesn’t mean I don’t love them. It doesn’t mean I don’t care. It means I’ve already spent so much of myself managing my body that sometimes I have very little left to give anyone else. This has a huge impact on relationships and affects everyone in ways that are hard to explain, it can create distance, disappointment, frustration and misunderstandings. The hardest part is knowing how much your illness affects the people you care about, even when you would give anything for things to be different.

If I seem caught up in myself sometimes, maybe that’s because myself is where all of this is happening. I’m not sitting around thinking about myself because I think I’m the most important person in the room. I’m thinking about myself because my body requires constant attention. And there is only so much mental capacity left after that.

There is a mental load to chronic illness that never really shuts off. I’m thinking about medications. Supplements. Water. Protein. Symptoms. Appointments. Bloodwork. Tests. Prescriptions. Insurance. Phone calls. Decisions. Energy. Recovery. Things I should remember. Things I’ve forgotten.

And somehow, on top of all of that, I’m supposed to manage my attitude, too.

It can be difficult for the people around me to understand why I can do something one day and not the next. Why I can go somewhere and then need to recover. Why something that seems simple can take so much out of me. It isn’t that I don’t want to. Sometimes I simply don’t have anything left to give.

Support Groups

Sometimes even finding people who understand can remind you of how much there is to deal with. Sometimes online support groups are exactly what I need. Someone says something and I think, yes. That’s it. You understand. I don’t have to explain. But sometimes I read everyone’s stories and feel worse. Because suddenly I’m reminded of just how much there is to deal with. More symptoms. More medications. More appointments. More things that can go wrong.

And Then There Are the Medications and Doctors

My list of medications is lengthy. The side effects and withdrawals have been tremendous, and there have been many medications over the years. Most recently, a medication I was taking for nearly a year caused extreme anxiety because my body never adapted to it. Eventually, I listened to what my body had been telling me and stopped. The anxiety improved almost immediately, but I don’t know yet what other costs there might be. Then my pain management doctor tried another medication. Even at the lowest dose, I spent weeks trying to adapt to it. Eventually, I stopped that one too. Now I’m dealing with withdrawal from both and decisions on how to move forward.

So even the things that are supposed to help can become another thing to manage.

Another decision.

Another adjustment.

Another thing my body has to endure.

This week, I had four doctor appointments, bloodwork, an ultrasound, insurance battles, phone calls, and decisions to make and this is not an unusual week.  I have a list of doctors that I see on a regular basis along with therapy and advocates.  I also have a list of tests and procedures that I have on a regular basis.  

This is just some of the life you may not see when you look at someone with chronic illness, it is difficult to see from the outside.

Chronic illness isn’t simply being sick. It is managing being sick. EVERY DAY.

You may see the things I manage to do. You may see me getting dressed. Going out. Talking. Laughing. Doing something around the house.

What you don’t see is everything I had to calculate to get there.

You don’t see what it cost me.

You don’t see what I couldn’t do because I chose to do that one thing.

You don’t see what happens afterward.

And you may never know how much effort went into something that looked completely ordinary to you.

That is the life you don’t see.

Coping with life-altering events and chronic illness support.