Selma Blair says she thought she was 'making it up' before MS diagnosis: 'I wasn't broken'

Now that she's in remission, Selma Blair is reflecting on the moments before receiving her multiple sclerosis diagnosis.

"Once I knew I had MS — which I’d had for a while — [things] made so much more sense," Blair told US Weekly in a July 2024 interview. To suppress the spasms that often accompany MS, she turned to alcohol. She thought she was "broken inside" and worried she was "making it up" before doctors confirmed she was ill.

Now, Blair says, "I'm so much happier. Yes. There are setbacks and my heart breaks when life goes off the rails. I was a sad person. I wanted joy and good things but I was living a lie because I didn’t know I was sick."

Blair got sober in 2016 and then, in 2018, the 52-year-old announced that she’d been diagnosed with MS, a central nervous system condition where the nerves become damaged, affecting the electrical signals in the brain. In 2021, she shared that she’d entered remission and no new lesions were forming.

Blair's day to day wasn't always this bright, not even when she first entered remission. But, she says, she's making significant progress. "I did not allow for how long recovery really took," Blair admitted. "I’ve had to fake it till I make it. I aged so much after the chemo and then menopause. That’s something no one talks about. But I’m getting back on track."

"I'm still here," she said.

Below, take a look back at Blair's road to remission.

What has Blair said about remission recently?

In an Instagram video update posted Jan. 30, the “Cruel Intentions” star shared that she “(hurts) all the time.”

“I say that only for you people that hurt also. I get it,” she added. Blair told US Weekly how important it is that she gives others with disabilities hope. So, she's candid about her emotions and struggles with MS.

Though she's in remission now, she explained that she still has some symptoms.

In November 2023, Blair opened up to “Meet the Press” host Kristen Welker about she’s now “doing better every day” but still experiences "pain every day."

“I have dystonia, also, that really doesn’t always flare up for entire conversations, but it’s almost like someone with a stutter maybe, or a type of Tourette’s,” Blair said in the interview. “So things go in and out. People don’t always understand that.”

Dystonia is defined by Mayo Clinic as a movement disorder that causes muscles to involuntarily contract, leading to repetitive or twisting movements.

“So there can be a lot of discrimination and confusion I think with people thinking I’m putting something on,” she continued. “But the real fact is I really am in pain all the time.”

Blair said there's a stiffness in her that never subsides, adding that there’s “no amount of Botox I could get in my back and muscles or massage or anything that’ll reach it.”

She explained that though she feels pain inside her body, she can’t physically feel anything on her skin. “I don’t feel it when someone touches me,” she said.

She also shared in the video that she’s living with another diagnosis — Ehlers-Danlos syndrome, a connective tissue disorder linked to MS.

“Ehlers Danlos will make you really stiff because I’ll pull my muscles too easily ... so I get some injuries,” Blair said.

What treatments has Selma Blair received for her MS?

In terms of treatment, Blair said that she’s undergone a hematopoietic stem-cell transplantation (HSCT). Doctors, she said, harvested the cells from her bone marrow before she was exposed to chemotherapy in an effort to reset her immune system.

She was opposed to chemo at first, but followed her doctor's advice.

“And we did it, and I immediately felt better. I never felt better than when I was on chemo,” she told Welker in 2023.

Since these treatments, Blair said at the time that her current pain level is “almost just as high, except for I don’t have this horrible trigeminal neuralgia I always had before the HSCT,” referring to a severe facial pain.

Blair said she continues to do intravenous immunoglobulin (IVIG) therapy, which she described as a four-hour blood transfusion, every two weeks. The therapy "keeps me from getting sick," Blair told US Weekly. She also has a home nurse and a service dog “for things people don’t see.”

She'll also get MRIs throughout the year to accompany her treatments. "I know a lot of people can’t afford it, but for me, [it] really alleviated the MS progression incredibly. It saved my life," US Weekly reports.

She's also gotten Botox injections — just not in her face. "I’ve had 100 Botox injections in my back to strengthen muscles, and that’s made me not bother with getting Botox in my face. When you have to deal with so much for your health you forget about what you look like," Blair added.

Selma Blair's MS diagnosis

Blair revealed in October 2018 that she had been diagnosed with MS in August that year, but said that she had likely been living with the disease for at least 15 years.

"I am a forthcoming person and I want my life to be full somehow. I want to play with my son again. I want to walk down the street and ride my horse. I have MS and I am ok," she wrote in an Instagram post at the time.

Since then, she's been open with her fans about her MS journey, participating in a documentary about her life and diagnosis, and sharing many updates on social media and in media interviews.

She's even started an adaptive clothing line with long-time friend and designer Isaac Mizrahi, which she discussed on TODAY in October 2023.

"I'm doing so much better, so much better," she told TODAY co-anchor Savannah Guthrie at the time. "I still have symptoms and dystonia and things that people might read as a little more extreme. It's just kind of a part of who I am, but my spirit is really good, and life has been great."

Blair said it was an experience with a stylist who didn't "make it a big deal" that she was living with a chronic illness that led her to get involved in adaptive fashion, or clothing and accessories for people who have difficulty using mainstream garments.

"We're taught you don't look capable if you're carrying around a chronic disease," Blair said, adding that she thanked the stylist on social media, which blew up, leading to her to work with Mizrahi on the line.

Selma Blair's MS symptoms

Blair also opened up to told TODAY.com in March 2023 about her life in remission.

“I don’t live in fear of this condition at all,” she said, adding that she's learned to live with a variety of lingering MS symptoms, including fatigue, speech glitches, and movement and balance challenges.

“I still have symptoms, (but) I do not have the absolute weakness that I had for a long time, and if I focus on something really truly and I’m awake, I can correct it. But often, it just takes a lot of energy,” she said.

For instance, Blair regularly has to normalize her gait while moving.

“Getting up, you would think I have a very difficult time walking the first few steps, but then I start to get in the rhythm and then if I’m uninterrupted for a while, I can absolutely walk smoothly. And then as soon as I sit down again, it starts all over when I start moving again. So that is pretty standard all the time,” she explained.

"I don’t know where my body always is in space when I’m tired. When I’m tired, I become very spastic, and my speech is dystonic,” she said, which occurs when muscles contract involuntarily.

The star, who has an 11-year-old son named Arthur, said she doesn't have a long-term prognosis for how long her remission will last. But she has found ways to manage symptoms when they do arise.

"I can sit on the ground in a squat position and a lot can be relieved. That is also another reason why I personally enjoy my service dog. It makes me look like I’m not a middle-aged woman having a breakdown in the street squatting as passersby are there, and I’m crying," she said, adding that she has a condition that makes her prone to involuntary crying, which she takes medicine for.

The sun is also "kryptonite" for Blair, who said her speech becomes very dystonic when she's in the sun, even for a few minutes.

"It's like hiccups. I become very weak in the sun. That is something (that happens) whether I’m in a flare or not. That is an autoimmune issue. The sun causes inflammation and, (for) a lot of people, that’s normal. It triggers autoimmune (issues)," she said. "Even though I’m not in an active flare and maybe won’t be for a long time, I do feel it, and they're called pseudo flares. And that seems to never leave me."

Blair also regularly deals with a lack of appetite.

“I only can digest food once I’m relaxed or else I’m kind of dry heaving. I just have a faster running nervous system than some,” she said.

Blair is the first to admit that she was lucky to have the resources to afford and access top-notch medical care, and she hopes to make that more accessible for everyone with MS.

"A lot of people aren’t getting the help and attention that they could," she said.

By talking openly about her own life with MS, Blair hopes to help other people who are dealing with the condition feel seen.

"When I’m talking about one of my issues that’s meant to cover a broader theme, not anyone else’s disability, but a broader theme of what it can do to feel supported in your community," she said.

This article was originally published on TODAY.com