Selma Blair Is Posting About Her MS Again — Is This Good or Bad?

Selma Blair Is Posting About Her MS Again — Is This Good or Bad?

MS_Wire_Ed_Tobias

Last October actress Selma Blair revealed that she’d been diagnosed with multiple sclerosis (MS). She did it by posting the announcement on her Instagram account.

Back then she wrote, “I have MS and I am ok.” She described her symptoms in some detail, but her overall viewpoint was generally positive.

“I am disabled. I fall sometimes. I drop things. My memory is foggy. And my left side is asking for directions from a broken gps. But we are doing it. And I laugh and I don’t know exactly what I will do precisely but I will do my best.”

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At the time I wrote a column saying that I thought using social media for the announcement was a good thing. I thought the actress would put a human face to our disease and could reach out, using her “star power,” to a demographic of people with MS who might need that kind of positive encouragement.

Recently, Blair again reached out by posting on Instagram. But this time I’m undecided about whether this is a good or bad thing. She describes her MS like this:

“It is uncomfortable. It is a stadium of uncontrollable anxiety at times. Going out, being sociable holds a heavy price. My brain is on fire. I am freezing. We feel alone with it … I choke with the pain of what I have lost and what I dare hope for.”

Selma Blair Instagram post

That Instagram post has generated more than 47,000 “likes,” but also some media headlines like these:

  • “Selma Blair Shares Heartbreaking Post About Multiple Sclerosis Battle: ‘We Feel Alone With It'”— The Inquisitor
  • “‘Every day is a struggle with multiple sclerosis’: Selma Blair” — Windsor Star
  • “Bedbound Selma Blair shares painful truth of living with multiple sclerosis as she ‘chokes at what she’s lost’ ” — Metro UK

Good or bad?

All of us with MS can identify with these feelings and we want people to understand what we go through. On the other hand, do we want to paint ourselves as heartbroken, always struggling, and “choking” over our loss? Granted, some of the problem lies with clickbait tabloid journalism. But isn’t some of it also because of the way in which Blair has chosen to, publicly, deal with her MS. We all need a place to share the fears and concerns that we have about our disease. But is it ideal to share them on an Instagram post to more than 800,000 followers, knowing that the post will be relayed by social and traditional media outlets to millions more?

Maybe posting to one of the many closed MS groups on Facebook would be a better way of sharing. On the other hand, Blair is upfront with her many fans. Maybe that’s not such a bad thing.

What do you think?

You’re invited to visit my personal blog at www.themswire.com.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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109 comments

    • Wendy says:

      Yep leave her alone! She expresses everything I feel. I’m sorry she has MS. I’m glad she has a voice that the public in here. She is a really really really good thing…For a really shitty disease. You go somewher for a really shitty disease. You go Selma!! Shout it from the top of the mountain!

      • Lloyd says:

        Dude, what Selma is doing is awesome for all of us cursed with this insidious disease. She has a very valuable mouth-piece and is using it to call out the wrath this cruel disease rages. So, be happy and treasure all she and others with her celebrity scream out about all this felonious AF disease robs from our lives.

        • Angie Tucker says:

          I see no difference in expressing the harsh realities of this disease than when people do about varying forms of cancer or other life altering diseases. Life with MS DOES change everything, but it doesn’t define who we are. And while Selma is being refreshingly real, she is also one of the public faces of MS Warriors! Being grief stricken may knock me down for a time, but I will always stand and fight again. Selma is depicting this truth to the world about what life with MS is about – the vulnerabilities along with the strength and resilience – and I am thankful!

      • Julia says:

        I say, leave her alone! None of us who have MS can know exactly how she feels but each of us knows how it feels to have MS. And she has as much right to express how she feels as any of us and in whatever medium she chooses. I’m sorry you feel crappy, Selma. I feel crappy, too. And I thank you for your eloquent description of the feeling of being tossed about by this disease.

      • Gena R. Wright says:

        I Agree! I was diagnosed in December of 2017. Everyone’s story gives me hope…that I’m not in this daily fight all alone. Keep Talking Selma 😊

        • Chris Cameron Kuiper says:

          I also agree, if you have been diagnosed with this horrible MS disease, then no matter who you are you definitely have every right to share your story. I read all the stories because it lets me know that I’m not in this fight alone! Keep talking Selma, it’s helping

      • Max Boyer Glynn says:

        I’m torn too. A lot of people ask me what I think of her dramatic and drastic posts. What drugs is she on that have caused her to lose her hair??? My experience with MS- I was diagnosed in my mid 20s and am now approaching 40- has been manageable but has required a lot of attention and self care. I’ve never seen anyone affected like this, so while I am so very sorry for her pain etc etc i am wondering if her being the “spokesperson” for the disease is helpful to others recently diagnosed….

    • Yeah i don't know about this says:

      I have suffered with PPMS for decades, and believe me I know how this disease can suck. That said, I am unclear why Selma Blair shaved her head and posed in over-sized clothing in an apparent attempt to look more convincingly ill? Also, being out-of-doors and diving into a a swimming pool is not terribly convincing.

      Just like the rest of you, I’m sure, I’ve had actual healthcare professionals deny my disease even when they have MRI and spinal tap results in their hands. Every new doctor thinks it is his duty to re-diagnose. Doc appointments are more an interrogation than anything else. That said, it only takes one famous MS patient hamming things up to make things even harder for the rest of us.

      If Selma Blair is going to live her disease on the internet, I hope she is honest and informed.

  1. Dorothy says:

    My husband and I have been dealing with his MS for 50years. He never complains about having this terrible, life changing disease. It robbed us of our youth. Made us adjust our plans for the future, and taught us to appreciate the little things that everyone else takes for granted; like walking! Together we managed to adjust to everything MS has thrown our way. It takes time. Everyone with any disease has to find their own way to cope. We are all different. Leave Blair alone. She is just trying to find her way.

    • Zuhaib says:

      Your right everyone is different and they need to deal with their MS in there own way. I have RRMS and I am only 30 years old. I thank the Lord all mighty for giving me this disease, it does set you back but also gives you time to evaluate your life. I am studying an AAT course and so far I am dealing with my condition perfectly. Hope everyone finds themselves and don’t let it dictate your life

    • Karen says:

      I agree! Leave her alone. This disease is horrible and is a thief. It takes and takes. You are one of the lucky couples who have managed to stay together. That’s wonderful!

    • Annie says:

      I agree with Dorothy. I was diagnosed 2 years ago and it was hard to deal with the dizziness, blurred eyes, pain in my left leg, headaches, fatigue, slurred speech, foggy brain, foot drop, and sleepless nights. Going on Tecfidera helped all of those symptoms and I now can work out again and live my active lifestyle again. How long? Noone knows what will happen at anytime. I was able to feel well again and I wish the same for Selma. I agree, let her express herseld and find her way.

      • Vanessa says:

        I think Selma is brave for opening up so candidly about this horrible disease. I was diagnosed in April 2018, and saw a handful of neurologists and MS specialists. They all assured me this was a “great time to have MS”, what with all the DMT’s available and new treatments on the horizon! Yet, despite following doctor’s orders, taking my little blue pill twice per day, changing my diet to avoid gluten and dairy, exercising at least 3x per week, and staying positive, I don’t feel any better! For every MS patient who manages to control their symptoms and go back to their normal lives, there are just as many who continue to struggle, despite trying everything in their power to feel better. The drug companies advertise all these happy people, smiling on their brochures while getting infused with drugs that might cause side effects just as scary as MS itself! So while most of us don’t go around choking on our loss and feeling sorry for ourselves every single day, we’re definitely allowed to have those moments. Society wants anything unpleasant (illness, disability) to be kept hidden, private.
        But why? Let’s be honest and open about this.

          • Sarah says:

            I think most MS’s that go through a complete MS workup is tested for Lyme and all the co-infections that go along. Most MS neurologist know this.

        • Michele says:

          I agree with you. I was diagnosed 12 years ago and thought it wasn’t a hard disease. Well that was because I caught it early but that didn’t do me much help because you do not get the right treatment until you show signs of this horrible disease. Now 12 years later and three different drugs later I am not getting better- just worse. I walk slow, my speech is mumbled, I can’t feel my fingertips and I can’t write anymore. I start OCREVUS on Monday and I am hoping that it can help me. We must get the awareness out there regardless of how.

        • gigi says:

          Yes, society does want it kept quiet. Because they can’t cure this. It will reach it’s inevitable end and leave anger and bitterness. My mother was diagnosed this horrible disease for 45 years (who knows how long she really had it) before it took her (everyone also swears this disease won’t take your life, But it does!! None of what happened to her wouldn’t have if MS didn’t invade) I have been angry for 3 years about all the LIES the internet and doctors spew about outcomes. Yes, some people don’t have the most pervasive type, but for those who do why hide it? Why leave the families unprepared? Denial doesn’t help you cope. My mother was the most positive person I have EVER met and it took it’s toll. She wanted to end the torture, yet looked at life positively, helped others, etc. There is no “pretty face” to show for ms. The sooner people are ‘real’ about it maybe someone will come up a real cure if they could just see what this terrible disease does. Put real MS sufferers on the brochures, commercials. I know that newly diagnosed would be scared but cancer scares people all the time and they can’t hide cancer any longer either. Forewarned is forearmed! I LOVE transparency. I would want to know. I did want to know. Selma can FEEL how she wants–all MS troopers deserve to feel they way they want. After all, they are the ones who are forced to face it. Expose MS for what it is. Why did it take her almost 15 years to be heard? Why? She gets her voice now. 🙂

  2. Victoria says:

    I don’t feel anyone has a “right” or “wrong,” a “good” or “bad” way of dealing with this disease. It is HER right to manage it however she feels works for her. I had a similar situation a couple years ago when I was diagnosed. I shared with my Facebook friends – mind you, I have a private account & am not famous- what irritated me was that one facebook friend reached out to my husband saying that maybe I shouldn’t post so much about what I was going through… my husband- who does not have Facebook mentioned it to me, but did not say who the person was (out of fear that they would be called out for it… I was left no choice but to announce to my “friends” about the situation, in which I said, “whoever doesn’t want to hear it, don’t follow me!!” Why should Selma be silenced for those who aren’t comfortable with it?? Everyone deals with this disease differently and we all know that there is no cookie cutter description of MS. So- for those who have people ask if they deal with what Selma deals with, they can remind them of that.

  3. Rosemarie McGourty says:

    I certainly hope that she is building a team to take care of the “whole” of her….we all need the mental and emotional support, along with the medical and physical. There are better sounding boards for fear and worry than social media.

  4. Goatgal says:

    I’d like to give her space to share how she feels. Hers is the instagram/facebook/twitter generation; mine is not. Most, if not all of us, have struggled with accepting the MS diagnosis along with the uncertainty that it brings. We MSers understand, and perhaps those who do not will increase their ability to understand, empathize and become more tolerant of all disabilities because of her posts. I do think she would be well served by finding a community of MS bloggers and posters through the MS foundations and other outlets. Though the general public may not see the hidden manifestations of MS, we in the community have the ability to support and assist her in her MS journey.

    • Ed Tobias says:

      Hi Goatgal,

      I think that “give her space” is a good choice of words. It represents other comments that I’ve read here. Maybe I’ve lived with MS so long, (nearly 40 years), that I’ve forgotten what it’s like to be young and have MS attack my life. I wonder how much I would have shared if the internet had existed in 1980.

      Ed

  5. Andrea Wirtz says:

    For her sake, I wish she’ll find her positivity again. The more she focuses on all the limitations and inabilities the more she’ll stress and therefor make herself worse.

  6. Kiyan says:

    I can tell you what my immediate reaction to reading the title of this column was: Selma Blair can deal with MS anyway she wants to, and it is none of anyone else’s business. That is, Selma Blair’s ‘star status’ doesn’t obligate her to deal with MS in one particular way.

    Dealing with MS is difficult enough; Ms. Blair probably does not want to be burdened by the pressures of being an MS advocate, or poster child at the moment. She never claimed to be an advocate either (as far as I know). Thus, I find the premise of your question to be flawed. Is it good or bad? Neither. It’s just another human being afflicted with a serious disease dealing with it her way.

    • Ed Tobias says:

      Kiyan,

      The title and the column were both designed to spark discussion about the use of social media and the special position that some people with MS hold as influencers. Obviously, that’s happening and I appreciate your taking the time to participate.

      Ed

    • gigi says:

      Here’s a view to consider: Being in the public eye opens you up to a crazy amount of criticism. People love to flay them open. So if she were to be walking around stumbling, or slurring her speech or God forbid- fall, imagine all he negative comments! My mother was stumbling and she would use our arms to steady herself while in public. In my preteen years we all knew why but to outsiders the rumors went wild. Kids at school asked me if she was a drunk. That mortified her so that’s when the cane came into her life. She said, “I’d rather think I’m a cripple than drunk”. By the time the walker came into the picture everyone in my small town knew it was an illness. (One they never understood, granted) As a public figure, Selma would be mercilessly attacked and misrepresented. I grew up with MS and I was shocked when I heard her. Cried for her, my mother, my loss, and anger over the disease. The media attacks any perceived weakness. I mean if someone gets a wrinkle or cellulite they are vilified. This way she gets to control some of the narrative.

  7. Suzie says:

    I have had MS for I’ve 36 years. I remember the fear of this disease that changed the course of my life Butkus family and I have dealt with and have led a full happy life. My fear is that Ms. Blair’s early understandable fears and lack of full knowledge of MS shared on her very public platform will instill fear and lack of hope to thousands of other newly diagnosed patients.

  8. Jay says:

    I dont think she has a responsibility to represent everybody with MS. She is describing her own battle, which is a very personal thing. Not every cloud has a silver lining imo, and not every day is good. I think any honest testimony of MS is a good thing, and painting something with “happy colors” just to comfort others worries is in my opinion not a very good thing. Yes, Click baits in media is a problem, but I also think trying to make a disease appear less serious than it is, is dishonest, and not doing anybody any favors. MS is a battle on many levels. And it can be very hard to stay positive when you go downhill. Everything you are, your health, YOU, is slowly but surely breaking. Then you have to appreciate every smile the days give you. Personally I went the “alternative” way with Dr Wheldons combined antibiotic treatment for my PPMS, which has worked extremely well for me, but it is still a continuous battle.

  9. Morris Butchart says:

    I believe the Selma Blairs posts are exactly what is needed. The suggestion that such comments be restricted to closed MS groups is in my opinion ridiculous. Why should we not discuss our medical problems openly?

  10. Ardra says:

    Society is under the false impression that Multiple Sclerosis is under control. Selma Blair is using her platform to bring attention to some of the realities of this disease. It is entirely Blair’s prerogative as to how she tells her own story. Selma Blair is not responsible for the media’s interpretation of her experience.

    • ardra says:

      Also, isn’t an article like this part of the (media) problem? Putting her name in the headline is click-bait that seems to have driven a lot of traffic to this post. It’s a cheap shot to turn around and criticize her for not sugar-coating her experience.

  11. Jana says:

    Are we, as a collective, really going to judge, criticize, dissect the methods, projections, message being relayed by a fellow MS’er? It’s inherently cruel, from my perspective.

    Each minute, day, hour of our lives is unique to each of us. MS-related or otherwise.

    Sometimes our experiences are similar and we relate, correlate, commiserate, but we should never, ever judge.

    We are a collective of unique beings facing a distinct struggle that affects each of us so differently that sometimes our distinctions are what bring us closer together.

    I was genuinely saddened by the perspective presented today. I am, however, eternally hopeful that we can rise together, around each other in relation to this topic, as opposed to falling to pieces.

    Selma Blair is a girl, a mother, a human, on her own trajectory, facing and processing her challenges with conviction. Any sentiments sent her way should be embellished with kindness, compassion and love. For me, I am absolutely thrilled to have her on my team. And, on my team, we don’t have restrictions, rules, boundaries for how each moment is managed, we’re all just doing the very best that we can, at any given moment.

  12. Barbara Ann Henke says:

    I had not heard that Selma Blair has MS. I have had it for approximately 30 years & it’s SPMS. We all have our way of coping with it, & I think it is her choice to explain how she deals with it. I’m so sorry, Selma. 🙏

  13. Terri says:

    Wow! She’s just trying to get a grip on how this impacts her life. She’s frustrated, like we’ve all been at some point. It’s difficult to explain to people because you look the same on the outside. It’s inside your head that goes crazy sometimes. She’ll find a way to do everything she want to. It takes time,and it’s not always graceful. I think it just makes us more ‘creative’. She has every right to express her thoughts and feelings.

      • Tanya says:

        I agree with you! Go Selma. I have MS and feel compelled to hide my pain so that others don’t pity me. So what she is doing is brave and real and I’m glad she is telling her story truthfully. I wish I could be that brave.

    • Melissa Maree says:

      I totally agree,she should be able to express herself wherever she wants and whenever she wants!! I’ve been diagnosed with RRMS since2012and I’m still in denial!! It has taken away so much but i have also learned more about life!! Vent all you want!!

  14. no name says:

    Do we really have hope? I learned Jan. 16 2015 that I had MS for 22 years. My neuro kept it from me. To I guess protect me. He took away my choices, medicine, travel……my life. I would have done stem cell, too late for me now. Let her be! I was hopeful, all the long time MSers said I would learn. I have. The disease sucks, big pharma wants their $$ and I hate the color orange. Slema, say your piece! Oh, can’t put my name out or will loose my insurance. When someone gives me hope or mylein repair…..I will have some hope.

  15. Jess says:

    Jeez. I think it’s her life and she can handle/manage her disease & emotions however it pleases her. This article is simply more judgment of someone else’s coping (unless it affects you directly somehow).

    • Ed Tobias says:

      Hi Jess,

      Thanks for your note. Just to be clear, I pass no judgment on how Blair is coping with her MS. I wrote my column hoping to generate a good discussion about how the actress is sharing her challenge with the public. I concluded: “Maybe posting to one of the many closed MS groups on Facebook would be a better way of sharing. On the other hand, Blair is upfront with her many fans. Maybe that’s not such a bad thing. What do you think?”

      The column has generated close to 30 comments over the past eight hours. I think that’s a good thing.

      Ed

      • Jess M says:

        Thanks for your response Ed, it’s appreciated!

        “Recently, Blair again reached out by posting on Instagram. But this time I’m undecided about whether this is a good or bad thing. She describes her MS like this…” Yes, of course it’s always great to have an open discussion on this very public platform but the above quote implies there is a good and/or bad (right v. wrong) way of discussing a very personal situation. If she’s inclined to share with the world, awesome! Let people know how difficult this disease and let them see your struggles. Or don’t. I’ll continue to support her along with the millions of others, however they choose to express themselves 🙂

  16. Certainly, she has every right to deal with this however she wants. We all know the first few years after DX is a wild ride both physically and emotionally. MS doesn’t care if you are an international star, a stay-at-home parent, an office worker or a lion tamer. But I would have to say that if I am completely honest, there is a tinge of jealousy. No one at work knows about my MS and I had to delete all of my social media accounts so that my home reality does not mix with my work reality. Someday, it would be nice to post my real feelings and take a little break, but that is not possible. I applaud anyone who is free to live authentically with their MS.

  17. Sherri says:

    I understand why she posts what she does on Instagram. What we don’t see is what she has internalized about the disease. For example, when I was first diagnosed in 2006, I talked about my disease on Facebook. I shared some of my feelings, but not all of them. I would imagine Selma is worried about the future of her career. To be honest, she should. I lost one of the most precious jobs in my life at the age of 35 in 2007: I was a registered nurse.

    Most people (other than my husband) don’t know how bad the MS has been for me. I tend to hide behind my own wall and hide my disease as best as I can, but for Selma to talk about her feelings on a social platform is better than what I’ve posted over the past 10 years on Facebook. Perhaps her raw emotions and honesty can help open up the reality of the disease for those who don’t understand it, and inspire current people with MS to talk more about their personal experiences. Just my two cents…

  18. Harold says:

    She is not the first, nor the last actor,who have had to deal with MS, some are still with us, some have passedaay, but they have all had to deal with their own MS problems. I myself have had MS since it came to visit in the summer of 1984; had to adjust my life, and grit my teeth to keep working and surviving.I made it to 62 before it got the better of me. Still have to live!

  19. FB says:

    I had never heard of Selma Blair unless the initial fuss arose over her original post about having MS. I still don’t know who she is (and I don’t really care either) but if she has a public profile then letting the realities of MS be known more widely is a good thing. There’s far too much gung ho BS with the “I’m running marathons/ climbing mountains despite having MS” brigade giving false impressions to the world that having MS is a walk in the park these days – implying that all you have to do is have the right attitude and you can do anything you set your mind to.

    Yes, a bit of optimism and hope is a good thing but far too many people have no idea of what living with MS is REALLY like. And in their unwitting ignorance people often tend to judge all PwMS the same – “if “insert name of celebrity/ marathon runner/ mountain climber here” can do it why can’t you – you just need to be positive and/or eat “insert name of cult diet” etc etc etc and you could do it too”. Aaaaaarrrrgghhhh…………

  20. Ashley Dano says:

    Do you not see how ironic it is that you deride click bait…while authoring a super click baity post? This is at the top of the home page and lord knows as soon as she posted on IG someone brought it up at the weekly content meeting. Who wants to post about Selma?? Come on. The problem I have with this is that you’re claiming to have no opinion and wanted to spark conversation. Really? I think you needed a post today and this seemed like a great traffic driver. I have MS and about a million things I’d rather discuss than how Selma Blair chooses to talk about her body on Instagram.

    • Ed Tobias says:

      There is no “weekly content meeting,” Ashley. I take full responsibility for the content of my columns. I wrote what I wrote because I had mixed emotions about Blair’s Instagram post and I wondered what others felt. I’ve certainly found out.

      Ed

      • Stephanie Spain says:

        Ed,

        I did post in support of Selma, but I understand your purpose. You certainly created an involved discussion! I will say, though, that we all say we want people to gain an understanding of what we go through. They never will from these MS groups, because no one else is here but those of us with MS or caregivers. Our society today is so enamored with celebrity that when they say something, the public hangs on every word. People like her can accomplish much of that broader understanding by just being a truthful patient.

  21. Katy says:

    This is raw, unfiltered, REAL, human emotion. Who are you to judge? MS is a nasty and unpredictable disease, and it is not spoken about nearly enough. Furthermore, so many struggle with invisible symptoms and are constantly having to justify to people what is wrong. I have great respect for Selma coming forward about such a vulnerable issue and sharing her story. It takes tremendous courage to do so, and negative commentary like this is exactly why so many don’t talk about it. Thanks for sharing your journey, Selma. You are certainly an inspiration to me and truly appreciate you shedding light on MS!

  22. Katie V. says:

    As written this article comes off as judgemental of the way which Selma Blair has shared her experience. It feels counterproductive and frankly pointless to do that.

    I personally appreciate her honesty and feel her posts show strength to people both with and without MS. I was diagnosed myself this past year and haven’t been able to figure out how to be open the way she has, and I greatly respect her sacrifice of privacy to be a nuanced advocate for others like me. It’s heartening to know the complex feelings you go through are shared my others, and can only be helpful to our experience for more of the public to also understand.

    I’m not sure if your intent was to be critical, but it very much is in the final execution. And not the tone of content I would hope to see when coming to this page.

  23. Leigh c says:

    Considering this website is actually just a bunch of people staying the obvious and trying to present it as “news” or something even valid this is a funny thing to call Selma Blair out on. There are a lot of depressing, useless “news” stories on here from msers who just want to be heard even if they claim they are trying to be positive. Case in point… Selma Blair can do whatever she wants and portray herself as she wants… it doesn’t need to be a news story on this website just to have “news”

  24. Chris king says:

    Each story is as unique as our disease.
    In the beginning there is understanding and grieving, there is acceptance and anger…..
    Any platform used for exposure to ms is a positive.
    And there are days I am crumpled and hardly can face the day! And I’m ok with her reminding folks the disease is horrible and crappy!
    I’m am strong and have come far in my my 2 1:2 year journey but at 54 I am scared for my future….low immunity and job positive what does the future hold…….
    Press on ms warriors!!

  25. Jean says:

    Her diagnosis is new. Mine was just 6 months ago. I felt exactly like her for most of the time. Shock. Unbelief. Fear. No TERROR! Feel like I am only now starting to actually believe my life isn’t over. Have PPMS. Lol still not sure what is going to happen but a little less afraid now. Only a little. She needs more time to come to terms. Is hard.

  26. Jen says:

    It’s her spotlight, she can use it however she wants to. I think she’s brave to be so honest in sharing her struggles and challenges on social media. She went undiagnosed for 15 yrs. Maybe talking about MS with 800,000 other people might help someone.

    Hi, Selma. Love you.

  27. Clare says:

    Good for her! It does get better (first g.p said ‘it was all in my head’. 2nd g.p sent me for scan to prove it!) I was diagnosed over 13 years ago, on Tysabri for the last 8 (my dmd of choice). I’ve lost a lot of truly toxic people which has helped too!

  28. Don says:

    Celebrities share or have shared all parts of their personal lives…it fills a role in society and if she is comfortable with it, great! I don’t yet understand what would be problematic or offensive about it…I have more trouble with drug marketing and not knowing what to believe in their polished pitches and presentations.

  29. jennifer morrison says:

    I think that everyone with MS (cliche alert here :)) expresses themselves in a different way, just as the disease itself presents. MS has a sense of humor, as we sway to the side and bump into walls, or when we drop the soap so many times in the shower we think of that really bad saying about soap and prison showers then bust out laughing. It also has an impish side where we can be in a meeting and all the sudden be stabbed with what feels like an ice pick, or end up with twitches that are so visible you wonder if the others sitting around the table can see them. MS has it’s ups and it’s downs. I think that Selma is treating Instagram like a diary she doesn’t mind sharing. She is being honest about her ups and downs. I would rather have blunt honesty, than pretty lies and half truths only meant to make me feel better.

  30. Stephanie Spain says:

    OK, because she is well known there will be distasteful media spins attached to her every comment but how is that different from what most of us with this diagnosis have experienced. It’s just that in many cases, the spin or judgement comes from bosses, co-workers, well-meaning friends or acquaintances, total strangers or even family. So, other than the titles attached by media, there is nothing wrong or unusual about what she said. All of us with MS understand and probably agree with it.

    Most importantly, she has the right to speak her truth, as we all have been encouraged to do so many times. I feel sure you can’t think we should only whisper about our symptoms in MS groups. I thought we wanted understanding given to the ravages of this ‘invisible’ disease.

    Leave her be, let her vent on bad days and be happy for the good ones. Stop worrying about MS getting some bad press. Deservedly so. It sucks!

  31. Jessica says:

    We all deal with this horrible disease differently. This is her way, it seems that it’s still new to her and she probably doesn’t know what to do with it. If social media helps her get it off her chest then let her have it. After diagnosis and dealing with horrible symptoms is hard for everyone.

  32. Dan says:

    Leave her alone. I’m glad she is venting to people so they can understand unlike the ms institute’s sites and organizations that lie to you. I’m living proof of what the society’s did to me.

  33. Carolyn says:

    I am thankful to Selma for sharing all sides of MS. She’s sharing what so many of us don’t (either by choice, necessity, or exhaustion). She’s naming the feelings of loss, grief, sadness, and fear. Thank goodness someone is. How many tales of MS have we read that look like ‘I ran a 5k, I don’t let my MS stop me!’ ? Truth is, MS hasn’t stopped that person *thus far*. ‘I don’t let MS…’ is a fallacy.
    Phew! Thanks for the chance to vent. Power to Selma and the truth!

  34. Jonathan Mitchell Elsenbroek says:

    I think Selma Blair posting about MS on social media is a good thing Ed. I love it and her too. I think she has a new follower on Instagram. Me.

    JE

  35. Amy Stotts says:

    Selma you are not alone. We all have our moments were we feel like we alone in this fight. Stay STRONG and hold your head up.

    • Marie says:

      I appreciate Selma sharing her story. I also was diagnosed with ms in October.
      As a health care professional I totally understand the importance of positivity however as I’ve been struggling with this new journey and everyone tells me their stories about this one or that one they know that has Ms and how great their doing it makes me feel 1. Like something is wrong with me and I’m just being a baby or 2. Makes me feel like their disregarding my struggles.
      Dont get me wrong it does give me hope hearing about the people that are doing so great but as much as I feel bad hearing negative stories for what their going through but,it helps knowing I’m not alone with what I’m experiencing. So, like many of the other responses I agree let people tell their stories good or bad. The public needs to realize this isn’t a one size fits all disease. I wish you all well.🙏

  36. Melissa says:

    I don’t see how anyone could criticize her for posting about this at all. She is an individual, dealing with a bad situation, and is being honest about it. Most people who have MS don’t want to be known as their disease, and I agree with that. She is not the representative of this disease, she is a person with a view that she has every right to express. It’s not up to any of us to decide what she should or should not say.

  37. Allie says:

    I think we all deal with this in our own way. If this helps her cope then why should anyone judge her for it? Also remember she is fairly newly diagnosed, I think we’ve all been there. The initial “I’ve got this I won’t let it get me down” only to hit a moment of deflation where it all just seems too hard.

  38. Beth Orvis says:

    I’m glad she is speaking out. MS is different for all of us. She is being honest and truthful and putting it out there for those who don’t know what MS does to the body, to actually see and hear what we go through. Especially the invisible parts. That’s the hardest to explain to others. And she’s doing it with honesty, hope and humor. Being a celebrity, people will watch and listen and hopefully understand a little better. I commend Miss Blair!

  39. Joshua M says:

    She is speaking a truth that we in the MS community have all experienced. There are a lot of eyes on MS community and I think that her overall positive outlook, like in her GMA interview overshadows her struggle with a chronic disease. I’m not public with my MS struggle on social media so I appreciate her openness.

  40. Katrina Kaiser says:

    I am so Excited that there is somebody out there who is approaching this disease in the way that THEY want, not just going by the stereotypical diagnosis and what to do and not to do. Just the fact that you have more outlets to speak about MS and aren’t afraid of doing that, brought tears to my eyes. I was diagnosed with MS in 2004 and I do the things that I want to do, to the best of my ability and that is all we can do and, of course, prayer is a wonderful thing too. You go the way YOU want to Selma and more power to you.

  41. Heather Driscoll says:

    I want to thank Selma for being so brave and sharing the ugly side of having MS with the world. I don’t think we should ever question the way anyone chooses to deal with an illness. I commend Selma for knowing she is in the spotlight and still sharing her story. A story that I have witnessed so many times with my mother it really touches home.

    Being in the public spotlight she knew there was a chance her posts could be twisted by tabloids and she took it. In my eyes she is a warrior and a hero. My mother has battled MS since I was 22 years old. (12 years now.) She was diagnosed when she was a few years younger than Selma. Hearing Selma’s story and seeing her bravery brings me to tears. I don’t think I can commend her enough for maintaining her spirit during her exacerbation this week. It was beyond encouraging. As someone with a loved one with MS she is breaking the stigma associated with it.

    Selma there is a whole team here who walks the MS walk annually who will be rooting for you and every other MS warrior.

    • Ed Tobias says:

      Thanks for taking the time to comment, Heather. I’ll have another column about Selma, specifically about her Oscars appearance, on Friday. Hint: I thought she was great.

      Ed

  42. Alex says:

    I have to share a totally different side to this article and its responses. How does the publicity affect us (me, or maybe there is someone who feels the same)? It’s twofold.

    While I have always maintained an “I’ve got this” attitude, the last week has brought me down. So down. Firstly, I was literally bombarded with people in my life who, after seeing Blair’s interview with Robin Williams, were “so sorry” for me because they just “didn’t understand” what I must feel like and be going through on a daily basis. “How are you?” “How can you keep up with your twins?” “How do you balance being a mom, a teacher, and a wife?”

    Loaded questions, my friends. These are not questions I can afford to ask myself on a daily basis. If I did.. if I stopped every day to “think” about my disease, I’d be in the gutter.

    I absolutely appreciated their gesture in reaching out. Just as I absolutely understand Selma’s reason for being public. I have told everyone close to me; and that includes my “work family” who have been very supportive of keeping me going as a teacher. I even posted about my diagnosis after one full year on Facebook. It’s therapeutic, literally having the strength to say to someone straighfaced “I have MS.” It took me about a year to say that without choking back tears. Tears for the unknown, really. Which brings me to the second reaction.

    I am again terrified. And it brought a million and one new questions I had for my neurologist.. questions that, again, no one can answer because no one can tell what the future holds.

    So, while it was amazing for her to come out and show the world what MS can look like (and I support anyone who seeks public or private support), for whatever reason I responded to it like a punch to the gut.

    • Ed Tobias says:

      Alex,

      Thanks, so much, for your thoughtful comments. I totally understand where you’re coming from, but the fact that this has all raised a ton of new questions for you to ask is a positive take-away. Your neuro may be able to answer some of them but don’t be shy about asking them here, or in the MS Forums section of this website. Those of us who’ve been living with MS for decades may have a few answers.

      And I do mean “living.” One of my columns raised that very issue earlier this month. I hope you’ll take a look and let me know what you think.

      https://multiplesclerosisnewstoday.com/2019/02/19/not-battling/

      Ed

  43. Alex says:

    Thanks Ed.. I had read that, and found it such a reaffirming mindset to have. That column actually allowed me to reflect on how I had reacted to my diagnosis, all the way up to now. I have since then learned that, as a person, I have not changed. I overcame life challenges before, and I swore to myself I’d persevere through the new. The unknown of MS (and honestly life itself) can be the “battle.” But at some point, as you so perfectly wrote, it’s all about mindset. And that’s ultimately (aside from taking care of ourselves and doing the best we can) the only aspect we have control of.

    Thank you for your support in the columns you create.

  44. Nancy says:

    She’s entitled to post her feelings just like anyone else. Just because she’s famous doesn’t make her immune to those feelings. I still mourn my job loss, house loss, camaraderie loss. I am a still sad after 6 years. There’s no time limit. People need to grieve in their own way. I say leave her alone but make sure she’s not alone in her feelings. So Selma, be proud of yourself! Time does see to help as you work through this disease. Not everyone shares the sentiment of “ I have ms but it doesn’t have me.” Maybe that’s a bad attitude but I say it’s grief.

  45. Sandra Schneider says:

    I’m thankful that Selma is putting a public face on this nightmare of a disease. I’ve had MS for 35 years. I’m practically bedridden. There are too many celebrities who put a pretty face on this disease. The pharmaceutical companies are no better, with their TV ads showing rosy-faced energetic people living a full life. The truth is that once your MS becomes progressive there is no medicine out there (not even HCST) which can help the majority of people. And, there is no proof that even the newer meds can prevent you from becoming progressive.

  46. Lisa says:

    I really believe that being judge mental on what her posts are doing for us is inappropriate. It is not her job to aid or advocate for the masses. She can and should post whatever is her reality, worrying about how it impacts anyone else should be the last thing on her mind. And I think she is helping.

  47. R.S says:

    I am living with this nasty disease,and every day is a struggle. At 1 point I was to afraid to tell people and talk about it. Hear in Selma,I now have the courage to speak about it.

  48. Chelle says:

    If that is how SHE is choosing to deal with it, and describe HER pain/issues it should be ok. I didnt read anywhere in this article that she signed up to be the poster child for everyone with MS. I get where you’re coming from, as I am someone with several autoimmune diseases who was diagnosed at a fairly young age (in my early 30’s). Yes it’s nice when celebrities chiise to use their platform to inform others of medical issues that a lot of people struggle with, but in this case i say we don’t get to judge; it’s her body, her life, and if she chooses to share it on her social media it is her perogitive as long as she doesn’t say she is speaking for everyone with this disease then so be it 🤷🏻‍♀️. Jmho

  49. Kari says:

    Please don’t shame people for telling their truth. She is only telling her story. If you’re offended, don’t follow it.

  50. Leslie H says:

    Everything she said is spot on! I don’t want to be defined as the girl w MS so I only told a few people that I have it Couldn’t imagine how hard it is for her to accept n tell the world she has an awful disease! And don’t we all miss who we were b4 and the life we lived! The only way I stay positive is being thankful my ride w MS isn’t as bad as I know it could be or get! I have hope to return to my old self some day:)

  51. Theresa says:

    Everyone’s journey with M.S is entirely different, this is how she feels and it’s the path she has chosen. ( Selma post as often as you feel the need to do so) it doesn’t matter what or how others think, This is her journey. God Bless Selma and Wishing her All The Best. 🦋🦋🦋🦋🦋

  52. Monta says:

    She’s human and she’s posting the reality of her MS. While it’s important to voice the strong, “I can soldier through this” side, it is equally as important to voice the day-to-day struggle of MS. I applaud her honesty and her courage to be honest: both as a strong woman and a vulnerable one. People need to understand what living with MS truly means.

  53. Ann S. says:

    The NUMBER ONE problem with MS —PEOPLE (friends & family) don’t understand it!! Why on earth would this journalist who has MS think it is a bad thing to post the truth about MS! Thank God finally someone is posting something other than touchy feely copy! Don’t get me wrong I appreciate all those who have figured out that balance of treatments, symptom management and feeling great! I am a very positive MS sufferer! I try most days to be wake up and be upbeat when honestly I don’t feel like it! I have a great MS friend who is in a wheel chair and he does the same! But I’m sure he doesn’t feel like it either! But we do it almost every day! And I do love reading positive stories it gives me hope! But some of us me included have very persistent MS!! I am not a candidate for many treatments! My body just doesn’t do well, blood pressure doesn’t, liver doesn’t, blood work doesn’t! Copaxen so far is all I have been able to do!! Believe me I’m grateful!
    So my gosh leave her alone, maybe some of my family and friends will read it and think I wonder if Ann has that!! Right!!?

    • Ed Tobias says:

      Hi Ann,

      Thanks for taking the time to comment. Just to be clear, this journalist (me) doesn’t think it’s bad to “post the truth” about MS. I simply asked what others thought about the posts. There were about 90 comments so, obviously, there were a lot of opinions. Most of them were similar to yours.

      Please take a look at the other columns that I’ve written about Ms. Blair, one before the one that you read and one after it. I think you’ll see that, overall, I’m a fan of hers and I think what she’s doing is great.

      Here are links to those columns:

      https://multiplesclerosisnewstoday.com/2018/10/30/selma-blair-ms-diagnosis-revelation-inspires-how-to-share-our-stories/

      https://multiplesclerosisnewstoday.com/2019/03/01/bravo-to-selma-blair-and-her-cane-for-appearing-at-the-oscars/

      Ed

      • Ann S. says:

        Thanks Ed I read the links you sent. I just think there are people with varying stages of the same bad MS disease. Those who are not at a progressive stage and there are those who are more progressive. I’m sure Selma is like many of us and realize there is no cut and dried answer to explain the rollercoaster life of MS. I honestly think there is no wrong way to share your MS story, every one is perfectly alright! I was diagnosed in 2009 at 50. I thought I had MS totally under control, Gilinia pills made me feel AMAZING, working full time, traveling with work, go go go (slower) than before diagnosis; but managing well. I remember thinking “I’ve got this!” And then1 1/2 yrs ago everything changed overnight when I got a UTI—antibiotic resistant, 105 fever, stroke level blood pressure and almost died in the hospital ER from feeling great 12 hours earlier. No Joke! It was literally like being in a Grays Anatomy episode and I lay there watching my life flash before me. So my discovery from this change in my MS overnight—MS makes us fragile, vulnerable and never predictable. It taught me life is precious and no amount of pushing myself to appear normal and act normal was worth dying! I have grieved three different times for the loss of what I once was! At my initial diagnosis and I lost my career as a full time muralist, when I almost died in the hospital and most recently when I had to give up my job because after “the ER day” I no longer had the stamina to go all day or the cognitive ability to remember clients. Each time I grieved, I wallowed, cried and felt sorry for myself (and I’m sure many of us have done it), but at some point in the wallowing process I realized; I’m am blessed to be alive and….come on “snap out of it” and pick up the pieces and wake up grateful tomorrow! I’m here today, kissing on my granddaughters and telling them dumb jokes fully aware how totally awesome that is to tell you! Life is good and wonderful, some of us get there by a hilly gravel road with snakes and pot holes and others get to take the turnpike!

        • Ed Tobias says:

          Ann,

          Thanks for sharing all of that. All that I can say is that you’re right about how this thing treats us all differently and we, in turn, handle it very differently. I particularly like the analogy you use in your final sentence. I’m going to have to add that to my list of MS-related advice, along with “sometimes even a pair of deuces can be a winning hand if you play it right and have some luck” and “life’s not about hiding form the storm, it’s about learning to dance in the rain.”

          So, let’s kiss our grandkids (I have a granddaughter who’s nearly 5 and a grandson who’s nearly 3) and dance on.

          Ed

  54. Nancy Dettbarn says:

    I think it’s wonderful and brave that she’s sharing her journey with this horrible disease. Bringing more awareness to it will hopefully bring about a real cure and eliminating it.

  55. Missy says:

    Selma is doing Selma and that is fine with me. It’s her MS journey.

    God Bless all of you in your lives & journeys ❤️✌🏻

  56. Let her do her…most ppl don’t really understand MS….so, post away and raise awareness. She’s tough and it’s great someone in the public eye can share widely. Free speech.

  57. This article irritated me to no end!

    Personally, I appreciate her candor and honesty.

    And I appreciate her bringing an honest look at this disease and how horrendous it can be. I have a friend who is a medical doctor- yes, a DOCTOR- who sometimes asks me the most stupid questions.

    If he, with all of his extensive training, doesn’t understand everything that goes into this disease, how can we expect the general public to?

    I’m grateful to Selma for being willing to expose what she’s going through, and hopefully bring awareness.

    People often don’t believe in what they can’t see.

    I’ve had people say to me so many times, “But you look great!” That can be flattering, but it can also make me feel like people don’t believe what I’m going through.

    And I get annoyed with young celebrities who are newly diagnosed and haven’t even begun to struggle yet, in that they often make the disease look like so much less then what it actually is.

    I applaud MS. Blair for her courage and I personally appreciate it greatly.

  58. Chaz says:

    I wonder why it is no one is asking the really hard question that many want an answer to but are afraid to ask. I am not. How is it even possible she was able to go from a diagnosis to HSCT when so very MANY OTHERS who have suffered for FAR FAR longer are being told they have not met the requirements regarding how many DMT’s they have tried etc ? Am I happy she received treatment ? Yes, Do I wish her well, sure but what I do not like at all is how she acts like she is a warrior who has suffered through years of trying to get a diagnosis, a decade of failed DMT’s to be told you have to “apply” for HSCT here or overseas and then find out you cannot afford it or you are not a candidate. While others may fawn all over her, I am not in your camp. She was able to get to the front of the line because of who she is, her very expensive neurologist and because she is a millionaire . . . perspective, that is what all those who are falling in love with her story really need to find . . . and fast. If she were a advocate, our voice, then she would be addressing why HSCT is so expensive and out of reach for the vast majority of those of us with MS. Instead, we are hearing about her one year post diagnosis struggle with Cadillac health care treatments that YOU cannot have. The story really needs to be, HOW did she get so far ahead of others in such a short time. I do not care if you disagree with my view of her expedited journey or not, I have MS and I have friends I would gladly help pay for and help them travel to get the same treatment she did, I can’t because they are not wealthy and are not being afforded the same red carpet access she did . . . that should bother everyone who is fighting the beast and if it does not, you need to take a hard look at yourself . .

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