By Bruce Darling

Nothing Magical Happened

Christina Applegate was back on MeSsy on Tuesday. She’d been gone seven months, much of that time in the hospital, and she came back with news most people would assume was good. After five years, her doctors told her she doesn’t have multiple sclerosis.

Her doctor actually opened with “Congratulations, you don’t have MS.” Christina told Jamie-Lynn Sigler she wasn’t happy at all, even though everyone around her was. I suspect a lot of Disabled people were nodding along before she got the words out.

Christina was blunt about it. Losing the MS label didn’t make her any less disabled or healthier, and in some ways her situation is worse. Her doctors now need to go back to the beginning to figure out what’s been going on since 2021.

Medicine tends to treat the label as the main event. Once the label changes, the case feels closed, and somebody thinks to say congratulations. Christina still woke up the next morning with the same symptoms and still needing to use a wheelchair. We’ve been saying for decades that disability has more to do with the barriers people run into than with the words on their medical record, and none of those barriers went away when her diagnosis went away.

Why losing a diagnosis is scary

Christina said MS had at least given her a reason her days were so hard, and now she’s back at square one. I understand that completely. I’m neuroatypical and when we first identified a specific diagnosis, I called up a friend and told him. He replied, “It means nothing and everything… all at the same time.” For me, diagnosis provided context and a framework for what I experience but didn’t change my life in any substantive way. The flipside – losing a diagnosis – can be devastating. Without a diagnosis, you can’t treat a medical condition. At best, you can mitigate symptoms.

There’s a practical side to this that most people never see. In this country, a diagnosis is how you get in the door. Medicaid, Social Security, insurance coverage for a power chair, accommodations at work. Almost all of that starts with a diagnosis code. So does being believed. We see this at CDR all the time with people whose conditions are rare or undiagnosed. They get told it’s in their heads, and they get asked over and over to prove they’re as disabled as they say they are.

Christina has resources most people will never have, including a Cedars-Sinai neurologist willing to come on her podcast. She still described being haunted by questions about whether she’d done something wrong and whether she’s really sick. Now think about someone whose personal assistance hours depend on the paperwork matching up.

A person who can’t walk from the car to the exam room needs the same help whether the chart says MS or “something else” or nothing at all. Supports ought to follow need.

One in five

Dr. Marwa Kaisey, a Cedars-Sinai neurologist, came on for the second episode and said MS misdiagnosis is fairly common. There’s no single test for it, nothing like a pregnancy test that tells you yes or no, so doctors work through a list of criteria instead. She said close to one in five people who were told they had MS turned out not to have it, some of them after decades, and most of them had been on MS medication.

Think about what that means for a person. You spend years building your life around the wrong answer and taking drugs for a disease you don’t have, while whatever you actually have goes untreated. Disabled people, women and people of color in particular, have been describing some version of this for a long time, from the rounds of specialists who shrug to the label that doesn’t hold up later. The uncertainty in medicine is real, and patients are the ones who end up paying for it.

“I lost everything. I lost my job.”

Christina stepped away from acting after Dead to Me wrapped in 2022. On the podcast she talked about a deep depression and said all of this stopped her life. She’s been open about how hard it has been for a long time, including more than 30 hospital stays since her diagnosis.

She also has more of a cushion than other people. Most Disabled people who lose a job lose their income and their health insurance right when they need them most, and then they have to deal with a benefits system that wants a diagnosis before it will help. What happened to Christina happens to a lot of people who never get a podcast to talk about it.
Christina, you didn’t let anybody down.

What got me was when she said she felt like she’d let everybody down. She and Sigler had become the faces of MS awareness, and she isn’t sure where she fits now.

Christina, you didn’t let anybody down. You told the truth when you thought it was MS, and you’re telling the truth now. And the truth you are telling now is our truth. You may not share the same diagnosis as folks with MS, but you share the same experience.

And the Disabled community doesn’t check diagnoses at the door. The disability rights movement was built cross-disability on purpose, and Centers for Independent Living like ours serve people based on what they’re dealing with rather than what their condition is called. In all my years with ADAPT, I never saw anybody ask to see a diagnosis before getting arrested next to someone. What brings us together is running into the same walls, and you’re still one of us, and you are using your skills and privilege to give voice to our community.

Same game, different name

Christina described where she is now as the same game with a different name, and for a lot of Disabled people that’s exactly right. You get sick and nobody believes you. Eventually you get a label, maybe a different one later, and the whole time you’re fighting for the support you need to live your life and in your own home.

It doesn’t have to work this way. Supports can be based on what people need instead of what their chart says, and a health system ought to be able to say “we don’t know yet” without walking away from the person in the bed. Believing Disabled people is a good place to start. So would waiting to say congratulations until the person tells you there’s something to celebrate.