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10 Tips for Creating a Life Worth Living With Chronic Illness

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It took me more than a decade of living with a severe chronic illness to finally even begin to figure out how to make a life worth living. Hopefully, what follows helps you to fast-track that process.

Without further ado, here’s what I’ve learned.

1. Have a Sense of Humor

When you’re chronically ill, things are going to happen. It’s not a matter of if, just when.

Awkward things. Embarrassing things. Disgusting things. We might as well learn to laugh at our situation as much as we can or else we will drown in a sea of sorrow.

2. Get Really Flexible

I’m not talking about yoga here, I’m talking about the fact that we will have days, weeks or months where all of our best-laid plans will need to be scratched through and we will find ourselves in the hospital, in bed or just in a really bad place emotionally.

It’s all good. This journey is a marathon not a sprint, so when plans go awry, roll with it. Even better, start to see detours as an adventure and ask yourself, “Where will my journey take me today?” And then refer back to point #1 and find the humor when you can.

3. Let Go of Expectations

Of yourself. Of others. Of your care team. Of how your life should unfold.

In my experience, none of it is going to be what you expect. This means getting real with yourself and what you can and can’t do both today and in the foreseeable future.

It means coming to terms with your limitations. It means rethinking what your goals are in life and what you believe your purpose to be. It means learning to simply “be” instead of having to “do.”

It means stopping all the planning and truly just living in the moment. It’s hard, but I believe this is the way to peace.

4. Be Forgiving

Of yourself. Of others.

In order to get good at point #3, you’ll have to become a pro at forgiveness. Mostly of yourself. We are usually our own harshest critic, so let go of the self-imposed shame and forgive.

And others. They are going to fail you in this and often you are going to be the only person who has your back. Forgive them anyway.

5. Become an Expert at Grieving

I knew for a while that I hadn’t figured out how to do this, but honestly could not for the life of me find the key. The truth is, I don’t think any of us can really get our head around the concept of grieving our own lives while we still live them.

The thing that made it click for me was reading a post online in which the author (now long forgotten) mentioned holding “a thousand little funerals” in her mind and slowly burying all of the aspects of her life that were lost — all the dreams, plans and hopes that would not unfold in the way she had thought. I loved the honor and sacredness that thought brought to the process.

It worked for me. Find what works for you and get good at it.

6. Find Joy in the Small Things

While you’re learning to grieve all the things, learn to find joy in literally everything that goes right.

There are fun award stickers you can buy now that say things like, “I put on pants” or “I showered today.” These may be funny for some (myself included once I learned point #1 above), but when you can barely make it out of bed, they are worth celebrating.

See a pretty bird? Smile big.

Able to take a short walk? Reward yourself in a healthy way.

Doing something creative? Truly lose yourself in it.

Slow down and savor a warm cup of tea. Put on your favorite fuzzy socks and wiggle your toes with glee. Laugh at nothing at all. Do whatever you have to, but find some joy.

7. Learn to Be Selfish

One of my favorite experts in the field of neuroscience and chronic illness, Dr. Gabor Maté, reiterates throughout his books and lectures that there is a very distinct correlation between people being overly giving of themselves and their development of a chronic illness.

If this is you (and I suspect it is), you’re going to have to do one of the hardest things you will ever do and learn to be selfish.

Learn to ask for help knowing you may never be able to return the favor. Learn to say “no” to yourself and others. Learn to get really good at guarding your energy and pouring what little you do have into your own life right now.

As they say, “Put your own mask on first.” And understand that action may take years to do.

8. Get Support

This is a little different from learning to be selfish in that I’m talking specifically about getting the right people in your life.

When you have a chronic illness, you will probably lose people in your life. And the longer you are sick, the more people you are likely to lose. The human brain seeks closure and when your illness doesn’t provide that, people can’t hang with it. It’s truly an injustice, but the sooner we face this the sooner we can find the right people.

The right people may come from the most unlikely places, will probably be few in number, and might take considerable time to find, but find people who love and support you emotionally and physically. It’s absolutely crucial.

At the same time…

9. Find Practical Hacks for Everything

Perhaps the greatest development that has helped the chronic illness community in recent years is the concept of grocery delivery. Without it, I would have starved to death years ago.

In today’s world of technology, you can do substantially all of life without ever leaving your home. (Trust me, I’ve had to.) Tap into all the hacks that make your life easier. I’m talking having things delivered to you, connecting with social services that are available, Ubering to doctor’s appointments and outsourcing anything you can’t physically do.

In my experience, if you’ve got a problem, there’s a solution out there.

10. Take Back Your Power

If I could tell someone who is just starting this journey what the single most important thing is to live well with a chronic illness, it would be to get really good at being your own advocate.

Learn everything you can about your condition. Attend appointments prepared and organized. Ask questions and don’t take “I don’t know” for an answer. If they don’t know, someone else might.

Don’t be afraid to replace members of your care team if you aren’t making progress or if you don’t feel heard. I stuck it out with providers who had no intention of working with me toward my goals for way too long for many years. Don’t make this mistake and waste valuable time.

Find resources and support groups. Reach out to experts and researchers in the field. Many answer emails!

Find ways every day to take back power over some aspect of your situation and celebrate it all. The big wins. The small wins. It all counts, because you count.

Like any difficult journey, living with chronic illness is what you make it. I stumble daily. If you’re reading this and struggling to keep going, I want you to know I’m proud of you for simply being exactly where you are, and I hope these ideas help you on your way.

We’re all in this together.

Originally published: February 12, 2020
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