Selma Blair's multiple sclerosis is still in remission, but she does have day-to-day struggles as a result of her condition.
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.
The 51-year-old announced in 2018 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.
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, but this is nothing that's like horrible scary stuff or anything," Blair said.
As for her MS symptoms, "I still get tired. I still am stiff all the time," she said. "If I'm by myself, I do move and walk better and in open space. Still I notice, when I go out, it's still very pronounced when I go in different rooms, hallways or meeting new people or even focusing on talking about it."
"I just want to sleep and then get on my horse and be better," she continued. "I'm a beginner every day, so it's like Groundhog Day. And I am doing really well. There's no complaining, but I don't know if I'll ever have the coordination or balance or stamina that I want. Still lucky so grateful. Still OK."
What has Blair said about remission recently?
Blair posted on Instagram on Jan. 30, saying that she is still in remission with her MS but explained that she has some symptoms.
She previously 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 that aired Nov. 26. “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. “And then I have a dog, and ‘I just want a dog with me.’ So there’s a lot of tricky stuff. But the real fact is I really am in pain all the time.”
Blair said specifically a feeling of stiffness 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.
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). She explained that doctors harvested from her bone marrow before she was exposed to deep chemotherapy in an effort to reset her immune system.
After her doctor suggested starting chemotherapy immediately, she said it was “the last thing I want.”
“And we did it, and I immediately felt better. I never felt better than when I was on chemo,” she told Welker.
As to how she’s feeling since the treatments, Blair said 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. She also has a home nurse and a service dog “for things people don’t see.”
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.
