Self & Other · Autoimmune Disease: Friendly Fire

Maya, Six Months Later

Stem cell therapies, microbiome interventions for inflammatory bowel disease, more sophisticated combinations of existing biologics — the field is busier than it has been in a long time. None of these will be a single magic answer. All of them, taken together, are pointing the same direction: toward treatments that target the specific failure of tolerance rather than the immune system as a whole.

The honest summary is that autoimmune disease in 2025 is, for many conditions, much better treated than it was in 2005, which was much better treated than it was in 1985. The trajectory is real. The pace varies by disease. The patient who reads about a promising trial and asks a doctor about it is not being unreasonable; they are, often, asking exactly the right question.

Maya, Six Months Later

Maya goes home from the hospital after five days. She comes home with a continuous glucose monitor on her arm and an insulin pump on her hip and a binder full of paperwork that her moms will end up keeping in a drawer in the kitchen for the rest of her childhood.

The first month is hard. She does not feel sick anymore, but she also does not feel like herself. She has to think about insulin every time she eats. She has to think about insulin before she exercises. She has to think about insulin when she sleeps. She is angry sometimes, and her moms let her be angry, and Dani at one point quietly takes a graduate-level continuing-education class in endocrinology so that she can understand the things the doctors are telling them well enough to translate.

The second month is also hard, in different ways. Maya goes back to school and decides she does not want to make a big thing about the diabetes, and then has to make a big thing about it anyway when her continuous monitor sends an alarm during a math test. She makes friends in an online group for teenagers with Type 1. She tries the swim team and finds that the routine actually helps her blood sugar stay stable, and that she likes the routine.

The third month is easier. Maya plays a volleyball game and, between her moms managing her snacks beforehand and her own monitoring during, gets through it without incident. She begins to feel that the disease is something she has, not something she is. The technology has gotten very good. The pump and the monitor talk to each other. Most of the time, the system more or less manages itself.

This will not be true every day. Maya will, over the rest of her life, have days when the disease is invisible and days when it is the only thing she can think about. She will have insurance fights. She will have nights when her blood sugar runs low at three in the morning and Lisa is the one who hears the alarm and brings her juice. She will have moments, for the rest of her life, when something a doctor says in passing makes her remember that her body is not, in this one small specific way, doing what other people’s bodies do.

But she will also have ordinary teenage years. She will have college, if she wants it. She will, in all likelihood, have a long life. The Type 1 diabetes diagnosis a child got in 1925 was a death sentence; the average life expectancy after diagnosis was about a year. The diagnosis Maya got in the 2020s is, with care and resources, compatible with almost any future she might want. The science that produced insulin in the 1920s, the technology that produced continuous glucose monitors in the 2010s, the biologics that may slow her rare but present complications, the antigen-specific therapies that may, in her lifetime, actually rebuild the tolerance she lost — these are not abstractions. They are the reasons her diagnosis, terrifying though it was, was not the worst thing that could have happened.


A last word about this chapter, before we move on.

If you are reading this and you have an autoimmune disease, or your child does, or your partner does, or your friend does, the most important thing the science has to offer you is something close to permission. Permission to stop looking for the moment in your past where you must have done something wrong. Permission to stop testing supplements and elimination diets that the evidence does not support. Permission to take the medications that work, and to ask doctors hard questions, and to find communities of people who understand what the disease is like from the inside. Permission to live, with the disease, the kind of full and ordinary life that the disease does not, by itself, prevent.

The body that has an autoimmune disease is not a body that has failed. It is a body whose tolerance system, almost certainly through factors entirely outside anyone’s control, made a particular kind of mistake. The mistake has consequences. The consequences are, in 2025, more manageable than they have ever been. They will, in 2035, be more manageable still.

In the meantime: the body is still, in every other way, the same body. It still has the innate first responders we met in Chapter 2. It still has the memory cells from Chapter 4. It still has its borders, its MHC, its Tregs, its careful daily quiet work of distinguishing self from other. The system has not collapsed. One specific calibration has gone wrong. The rest of the city, around that one wrong street, is still running.

The next chapter is about the opposite kind of failure: when parts of the immune system don’t work at all, and the question becomes not how to suppress an attack, but how to make a defense that isn’t there. It is a smaller chapter, in some ways, but the people who live in it deserve to be seen too. We’ll meet them next.


Questions to talk about

No answer key. These are for arguing over, with someone who read the same chapter.

  1. Thirst, night waking, weight loss while eating more, tiredness that sleep does not fix. Her parents noticed and did not panic. Was that wrong? What would you have done?
  2. The chapter ends by saying the system has not collapsed — one specific calibration has gone wrong, and the rest of the city is still running. Why is that framing important for someone living with it?
  3. The book has been building toward this chapter all along. Why would a book about the immune system be building toward the chapter where it attacks you?

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