A beloved friend was recently diagnosed with a chronic illness. It is not fatal, but it is life-altering. She asked me what I would tell her; she’s watched me live with my chronic illness for decades. We talked, and then I wrote it down. Perhaps this would also be helpful for you, or someone you know.

Dearest friend,

I’m so so sorry to hear about your diagnosis.

I know it’s not what you wanted to hear. It’s not what anyone would have wanted to hear.

I hoped it would be a simple, easy answer, maybe a common virus that resolves itself in a week.

Not so much.

I’m sending you a hug. I’m here to listen. I love you.

You asked, what guidance would I give you, as a friend who was diagnosed with her own chronic autoimmune illness three decades ago. You’ve watched me live with it, as I was hospitalized, as we backpacked in Europe together, as we danced at 2 in the morning in Florida or D.C. or southern France. You watched me desperately seek out ice when I was anemic and didn’t know it. You watched me hunt for yogurt every morning to take a crushed pill.

So what would I tell you?

An illness never has good timing, but I’m glad this is happening in 2023, not 1993. We have more medications now. The biologic that put my illness into remission didn’t exist when I was first diagnosed. There are more alternative options now that are widely accepted and available. I didn’t know until a few years ago that acupuncture would help me, that light therapy in the morning would be so useful, that moving my body every day for 20 minutes makes such a difference.

What I mean is: There are many things waiting out there that will help you feel better, and you will learn what they are.

It’s not particularly easy. Autoimmune illnesses are vexing and particular, and they play out wildly differently in different bodies. One medication works for one person, not for another. You might try something and it does nothing. But then you’ll try something else and notice relief.

The puzzle of autoimmune illnesses makes it even more important to listen to your body. I find a notebook helpful. List out your day — how you are feeling, what is making your symptoms worse, where you find relief, what you are eating, what medication you are taking. You’ll start to become more aware of what factors matter to your body.

The note-taking gives you agency. It gives you a role in this bewildering, unmooring illness, to track the signs and start to figure it out.

Some people say they have reversed their course of illness through radical lifestyle changes. Sleeping more, or eating differently, or exercising devotedly.

I never managed to do that. For me, it’s been a mix of medication, plus attention to sleep, diet, light therapy, movement, and at times acupuncture. Sleep and eating well make a huge difference for me, but so does the medication. Every time I try to stop a medication, thinking — I’m so healthy right now! I feel great. I don’t need this at all. — it sets me back. So a cautionary note …

It can also be challenging to find the right medication. Different bodies respond in different ways. I tried a dozen different pills and infusions over 30 years before finding the one that makes a life-changing difference for me. If the first medication you try doesn’t help, please don’t despair. There are others.

Try to be patient. There is a version of you in the future who is not in so much pain, who has a system in place.

Try to hold onto hope.

Try to look for the joys, transfer your attention there, whatever they are — bright buds in the garden, your child’s giggles, a delicious meal, the sunshine on your face.

Victor Frankl, who wrote Man’s Search for Meaning, went through a horrific ordeal for 4 years, the extreme of the human condition. He was a Jewish physician when the Nazis imprisoned him. He wrote:

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

I’m not saying there is a silver lining. This sucks. I wish I could undo it with a magic wand. I wish it wasn’t happening.

It is happening. And all of our lives have some sorrow, some challenge, some difficulties.

It’s not going to be easy to accept, but once you do, once you start to understand what causes your flares, what helps you, once you have a doctor you trust to help you navigate this, it will get easier.

It will get easier.

You are at the first days, the earliest, most disconcerting, bewildering, upsetting part — when your world is upended and the future is blurry and the way to a less painful hour is unknown.

It will get easier.

I love you. I’m here to listen. I’m here to help you find things that help.

You are still you, and you’ll figure out how to be you with this new diagnosis.

Love,
Brianne