i’m getting worse (autoimmune update)

Hey, I’m Zach, and I’m getting worse. About eight months ago, I got diagnosed with ankylosing spondylitis, A.S for short. But in reality, it’s something that I’ve been dealing with for over ten years. The short of it is that I have bone growing where bone shouldn’t be. If left untreated, I would just become one giant stiff bone body man. Sounds cooler than it actually is. It’s an inflammatory disease that causes me a great deal of pain and, often, keeps me from sleeping at night. Not sleeping leaves me fatigued and in just this constant fog. Symptoms get worse any time I’m immobile for a long period of time. So sitting at my desk, laying in bed. Airplanes is a big one. Oh, sorry, excuse me. It f*cking sucks. It sucks. I’m living with a baseline of pain every single day, to the point that I forget what it’s like to not hurt… somewhere. Eight months ago, I got language to explain the chronic pain that I had been feeling. But this video is not about my diagnosis. It’s about everything that’s happened since. [i’m getting worse] So I started my medication and for a few months, life was incredible. I was able to sleep throughout the night without waking up in pain. I wasn’t stiff throughout the day, my body felt safe. During this time I was instructed to keep up with physical activity, *laughing* “Bowie!” but as the months passed, I got a little lax. F*cking sue me, I got lazy. I figured you know, I don’t hurt every day anymore, so maybe it’s okay if I missed exercising this week to stay late and edit or you know, it’s okay if I spend the whole weekend on the couch being a lazy sack of sh*t cause that’s what normal people do. But I’m not normal. Not anymore. Like with any invisible illness, I look okay- at least I think, I think, I think I look okay. But it’s a bizarre experience because it’s it’s just that. It’s invisible. You feel like you’re deteriorating on the inside, but you have nothing on the outside to prove it. So no one can see you getting sicker. You can’t see yourself getting sicker. I started waking up again in the middle of the night. At first confused, and then as the weeks went by, a nagging discomfort, then a pain. I was distracted, I was upset. I was back to where I was eight months ago. I was in pain all the time, but still with all that evidence screaming in my face, I was back to the same old bullshit of not accepting my own reality. Why? Why? Why? The truth is– the truth is I started ignoring my disease the second I could, the moment that my medicine started working. I stopped paying attention to it. I stopped researching it. I didn’t want to know more about my A.S. because the more that I would learn, the more I would have to accept that this is now a part of me. This is now a part of me. And that was a huge f*cking mistake. Yesterday, I had the worst flare-up I’ve ever had in my life. My neck felt swollen. I had a horrible headache, my body hurt. Um, today, even worse. So I’m laying on, Cassie Mobis peas, Keith’s Eggo waffles, and real ice. I have my little setup right here. [Keith] Do you feel like it’s worse than yesterday? Yeah, it’s worse than yesterday. My back is stiff, my neck is stiff. I… This whole week I haven’t been able to sleep. I’m afraid that I’m just gonna keep getting worse. It’s so easy to normalize the pain and just think like yeah, this is, how I feel. I don’t want to do that anymore. So it was time to go back to the doctor, finally ready to accept and confront my symptoms, and ready to attack this sickness head-on, and- he said I was fine. My inflammatory markers were still low, which means that the medicine was- the medicine is still working, which meant that I’m okay. And so I had to go home, uh, wondering if it was just all in my head. But then, I thought about you. After my first video on A.S, I got a ton of incredible emails, some people who found out that they also had A.S, or some who just discovered they had a different autoimmune disease, others who just had that something in their lives that they had been ignoring for far too long and decided, it’s time to do something about it. Your emails made me realize that if I’m gonna talk the talk, I gotta walk the walk, and so, I decided to make my health a full-time job. Physical therapy twice a week. Yoga and stretching, first thing when I wake up, and last thing before I go to bed. Long walks with Bowie every single day instead of letting someone else walk him for me. And exercise, especially on the days that I don’t want to. Accepting that, sometimes, being late to work in the morning is a necessary component to my health. Realizing that I need to push things to make room for physical activity in my life. Learning to close the laptop at the end of the day, get off my ass, and go outside. Experimenting with autoimmune diets and natural sleep aids. Listening to my body, and hearing what it has to say. And after all that? I feel okay. *laugh* I feel okay. I still have a baseline of pain, most days. I have days where I’m stiff. I have flare-ups. Some days, I just don’t sleep, and the fog is certainly not entirely gone. And in truth, I don’t know that I’m ever gonna fully be a hundred percent again. But I am done ignoring my pain. I’m sharing this all as a way to show that, treatment is not an upward trajectory. It goes up, and it goes down, and with luck, it goes back up again. It’s a bumpy f*cking road. I have A.S. for life. There’s no day where I get to ignore my treatment or stop my physical activity. This is it. This is it. This is my life. But this is my responsibility. And how I respond now decides the rest of my life, and I decide that I’m gonna kick its f*cking ass. That I’m going to continue to prioritize myself and my health. That this is not going to stop me from doing the things that I love to do, and it sure as hell is not gonna define me. Cause also it’s a stupid sounding disease. It’s Ankylosing Spondylitis. It’s a dumb name. I’m not trying to demean it, but like… I’ve got a lot of life to live and, ain’t nothing gonna hold me back. So, my name is Zach and, I’m getting worse. But I’m also getting better. “Eugene, can you open this for me please?” Eugene: “This does not affect your fingers.” (Keith laughs) Eugene: “You’re just making me do this cause you like-” Zach: “Can you feed me?” Eugene: “See?” Keith: “Is the seaweed helping?” Zach: “Mhm.”

100 thoughts on “i’m getting worse (autoimmune update)

  1. I have Rheumatoid Arthritis since I was a child. Autoimmune diseases sucks but we have to pull hard from it. They say autoimmune disease can be healed by eating extremely healthy.

  2. I can't believe how unbelievably Brave you are to show a sensitive subject in your life. I have a connective tissue disorder that causes a great deal of pain and I completely relate to what you said. I hope you start feeling a little bit better the only thing I can recommend is listening to your body

  3. Please try shambhavi mahamudra at isha inner engineering at Tennessee. McMinnville. Then continue with further programs offered at isha. They have managed to control marble bone disease , which is a genetic disorder. I want you to practice what you learn at isha with Reverence and then put a video at least after practicing for six months .

  4. Thank you so much for sharing this video. So much love. I want to change my life for the better. Im so inspired.

  5. Yeah and then you have the super empowered females who are all about hashtagfatacceptance.
    Bitches are not listening to their bodies and think some hashtag on instagram will change how biology works.

  6. Zach, thank you for posting this. I'm glad you're taking care of yourself, and I hope you continue to do so. You're awesome, and we love you.

  7. I have psoriasis and psoriatic arthritis. I get the lower back pain and stiffness with inactivity. All I have found so far to cope is try and really appreciate the good days. Although if you aren’t having many that is very hardxxx

  8. Jesus my friend… many persons are encountering Him in these times and are sharing their experiences on YouTube- even through near death experiences- some leaving the New Age Movement to follow Him since they came to realize how real He is and that He is coming very soon- after this antichrist One World Religion and Order. He heals, He saves and it shouldn't be so far fetched that He is the Son of God displaying supernatural miracles since us being conscious, alive and creative is a supernatural miracle on its own as we are indeed created beings so just as a chair has a creator we do as well…. draw near God through historical and biblical Jesus and He will give you peace innthis journey of yours and He will answer you and your questions. Its never been about religion but sincere relationship with Him that matters. Learn of the real Him not the religion people made about Him- truly seeking Him will make all the difference… don't take my word for it- when I encountered Him- I read the Bible myself and I was forever changed.. so much peace, love, joy and wisdom in coming to our true purpose in God's will. No more searching, no more self effort- just resting in the truth about God.. which is in Jesus. It leads to Him. He is the way, the truth and the life. We all need Him. Religion is narcissistic- about us earning salvation but Jesus is about what He already did for us on the cross- a life for a life- the ransom for all sins- when you repent and believe in what He already did- you are saved. God is just so you will account for all you did here on earth- Jesus alone provided atonement for all sin. We NEED Him. As God is just (something we aren't used to here on earth) we can't say we'll never sin again and expect that to clear our past – like saying that to a judge concerning a parking ticket- you gotta pay up- what Jesus did for all is pay the ransom- so God justice is satisfied as He has love but also integrity judging all fairly. Please seek Him especially now- you will not regret it brother. God loves you and may you be blessed by Him in Jesus name! Much love

  9. That's how my daughter feels .. she constantly sore daily. In fact she thought everyone felt like this.. to look at her you wouldn't know .. because like your condition it's hidden ..

  10. This video just brought the realistic of the grieving process when getting diagnosed with a physical disease. So many people dis regard that your have to grieve diseases and disorders just like grieving the death of a some one you love. Thank your for this video and I hope your symptoms and flare ups get more bearable.

  11. My mom has lupus and my brother also has an auto immune disease as well that he was recently diagnosed with. Stay strong brother

  12. I feel all of this, and I'm still in the middle of getting a final diagnosis for my auto immune disease. :< I've either got lupus or M.S., and the stress of waiting for test results and having insurance deny claims for tests is just one more straw on an already broken back. Its exhausting, and I wish it could get easier. I wish I could stop feeling broken. I sure as hell wish I could stop crying.

  13. Hi Zack, about 4 months ago i got diagnosted after suffering from pain for 6 months with Black Disc Syndrome. It got me in depression, because is causes so much pain, like horrible back and legs pain. I started treatment, and taking care of myself, swimming was the best opcion. I’ve been feeling better. But just like you, mine isn’t gona go away ever. But im learning to live with it, little by little. You have all my support Zack!

  14. Thank you for sharing. I understand what you described completely. You have the right attitude & that will serve you well. Laughing through the Pain is a book one of my “ologists” recommended & it’s not always easy but it’s better than the alternative.

  15. I am crying. I have followed the try guys erratically for years, but have never commented. YouTube algorithms decided I needed to see this and for once I actually agree. This video was so heart wrenchingly relatable and inspirational that I couldn’t stay silent. Thank you for being vulnerable enough to make content about invisible illnesses.

    I have had daily headaches and chronic migraines for 20 years. Recently they’ve gotten worse and for the last 3 years I’ve been in and out of the hospital due to brain swelling that causes me to black out and damages the portion of my brain that is responsible for executive functioning (language, short term memory, sense of order). It’s so frustrating to miss out on mundane daily life (dates, casual get togethers, farmers markets, work meetings) and important things (my grandfather’s funeral, my oldest friends wedding, turning down a phd opportunity and needing to dropping out of grad school to focus on my health.) It can seriously suck.

    But all the beautiful, amazing and sometimes bittersweet moment in life that I DO get to experience makes life worth living. We are more than our conditions?

    The one word that captures my journey toward self love and acceptance of my challenges is grace. Having the grace to accept that some days my best is crawling out of bed, remembering to take my medications and getting food into my body. Other days my best is working a full day, going out to dinner with friends AND running a load of laundry or checking out an awesome local cafe and buying GF treats and going on a glorious 10 mile hike.

    It gets better and worse, my least favorite question in the world is “how are you?” because I feel like I either have to lie or am a constant downer, because I’m always in some degree of pain. My favorite is when friends and coworkers still include me in plans, even if I can’t make it every time because they know my absence isn’t a lack of interest it’s a health condition and even with all that they still want me in their life.

    I loved that Keith donated his waffles to the cause and the people around you care. You’re a fighter and I’m rooting for your to live your best life, I aspire to do the same ?

  16. I have AS and I’m without insurance so I’m without meds right now. I get it. I was diagnosed at 22 and I’m 48 now. I cycled on and off meds for years. Gnarly side effects from the meds. Yup just hate feeling broken. I feel that!

  17. How do bone spurs cause so much pain? Do you have spurs all over? This is coming from someone who had a spinal cord tumor and now has Cauda Equina.

  18. Cbd and marijuana is the only thing that helps me with pain. I would take two 500mg ibuprofen or naproxen and I would still be in so much pain from period. My legs literally get so numb sometimes and I get so nauseous and weak and the doctors never believed me all they did was give me more meds that don’t even help and I’ve told them it doesn’t help. So I started marijuana and cbd and have been using for 5 years already and it’s been the best

  19. I was diagnosed with an autoimmune disease, Multiple Sclerosis, and i definitely understand everything and how the flare up sucks and no sleeping and how depressing it can be sometimes

  20. Please think about researching CBD oil and marijuana medical usage. I don’t know where you live but please check it out. It does work , not saying that prescribed medications don’t. But it never hurts to have everything available to yourself . I wish you best in your life and hope that there will be. More pain free days that last longer and it does take time to learn to love you????❤️❤️❤️❤️good luck.

  21. Im getting worse but im also getting better… Im crying. As someone who suffers with a lot of different mental illnesses. Major Anxiety, Major Depression, And PTSD. Hearing that other people are confronted there illnesses really makes me smile. So… Let's all kick Ass. And say not today Satan, Not Today Brian, Not today Bones. And live life to the fullest

  22. Switch your diet, try cutting out all inflammatory foods and sticking to animal products. Try it, it works for many people.

  23. thank you for being so transparent about your condition! i can not even imagine your struggles.stay strong and i wish you all the best ?

  24. As someone else who has chronic illnesses that are invisible to people who just look at me the comment “because that’s what normal people do…but I’m not normal.” Hit home. In highschool I ended up overworking myself to the point my body was shutting down (I couldn’t pee anymore, I had hemorrhoids and ulcers, I couldn’t keep down food or water for a while) because I was being pushed and was pushing myself to pretend to be normal and do my day like “normal people”, but I’m not normal and I never will be. I have to go at my own pace and I have to take care of myself first before school or work or socializing etc. it’s okay to not be okay, and it’s okay to be sick, I just have to prioritize that first and I can’t force myself to pretend to be someone I’m not and if meeting all my needs to stay healthy wears me out and that’s all I can do that day…that’s okay. There’s always tomorrow and if I don’t deal with it now then tomorrow will be worse

  25. TW: trans issues, mental health issues, leaving parents. I'll add more if necessary.

    This made me tear up. Very few videos do that.

    I have depression, anxiety, and ADHD. This, combined with my personality and how I learn, made school this past year a living hell. I had weeks that were fine, but I also had a period when I skipped school every Monday, was late on a regular basis, and went to the councilor's office once a week. This year I'm not going to public school. I hope it works or at least helps.

    I'm also trans (they/them). My dad is unsupportive, and last year there was a period of about 1-2 months where he refused to use my pronouns. He also forced me to attend church even though he KNEW I'm Athiest. He has literally compared top surgery to self harm and hasn't EVER made ANY effort to be accepting in any way. Using my pronouns, name, and correct identifiers is the most he has ever done. As of the day after Father's Day this year I have been living with my mom full-time. This made my anxiety and depression reach an all time low, since I literally cut my dad out of my life (temporarily, I hope). I think the list of things that triggered me or made me uncomfortable more than doubled in size. I'm still dealing with most of those. I've been surviving, but I've been SO unhealthy. I've been mean, insensitive, rude, haven't been taking care of my body etc. I've regretted the way I've treated my mom the most. I want to change but there's just SO MUCH to do.

    Basically, this video made me tear up because this is what I want to do with all my heart. It's so, so, so scary, but you're doing it I hope I can too. I don't want my dad's bad parenting or me being neuroatypical to keep me from living my life and enjoying it as much as I can. Thank you so much, Zach. Really.

  26. Get a TMA test done to see what your minerals look like. You could have some severe imbalances (deficiencies/overloads/toxicities). You'd be amazed at what minerals cause certain diseases.

  27. I havent watched try guys and I come back a year and a half later and I'm like noooooooo go away bones! Go away pain!

  28. I have severe Crohn's & Colitis.. (ibd) its an invisible illness, also immune. I live with chronic pain also. It steals your life and there is very little effective treatment. ??

  29. I totally understand this, I have Lupus, and have pain constantly, on antibiotics all the time, and two heart surgeries and lung trauma.

  30. I’ve been recently diagnosed with a rare autoimmune diseased called Stills disease. It’s been making me very sick past 3 years. I’ve been practically bed ridden from this disease. I’ve never felt so lonely, but I’ve started immune therapy for it and have been approving. Stills is similar to lupus. With Stills you get high grade fevers (and lowgrad fevers) every day with muscle pain and joint pain. You also get a rash that covers big portion of your body. It can be very itchy or non itchy at all. Practically your body feels like it has the flu with 100 times more pain. It’s been a long journey but I’m determined to go in remission. I hope you find a way to deal with the pain Zach, I know it feels lonely having no body to understand. People can’t understand the pain when they haven’t been through it. I suggest joining a support group for your autoimmune disease online so you can connect with people going through the same thing as you. It really helps to lift up your spirits knowing you aren’t alone.

  31. U are pretty cute actually, that was not what I wanted to say thou. A shipload of good energy and I know how it feels with cronic stuff <3 <3 <3

  32. I have RA and I was taken off my beloved ibuprofen because my kidneys were not pleased. So I had a flare after feeling the best I have since my diagnosis of 4 years . I felt hopeless and thought I would have a life of pain. Then I thought, no, fuck you RA. I make my comfort a priority and that includes everyday meds, careful diet, and physical activity. I loved this piece. We are all getting worse and better at the same time.

  33. Coming to terms and making your health a priority sucks and it's not fun but its so necessary. What a cool use of the platform to encourage others to do the same.

    Unrelated but I SAW THE AWCC BEARS FOR .3 SECONDS and I think another AK clip as well. I doubt you remember but I actually met the you guys in when I worked at AWCC in AK and you helped throw enrichment to our wolves.

    Anyway best of luck man

  34. I am literally crying , I have a chronic pain , you inspired me to expect it and not ignore ,and exept that it is a part of me even if im better

  35. Change your diet. All inflammatory autoimmune diseases are tied to what you put into your body. Research anti-inflammatory foods, eating them help with my inflammatory autoimmune illness (lyme, fibromyalgia).

  36. Humara sucksssss. My mom has Rheumatoid arthritis, (and it runs through the family), and humara made her basically grow a mustache, and caused more pain. She would cry from pain. And I know a lot of people that humara did similar things to. Started good, but before a year was up, slowly got less effective.

  37. My heart hurts.. chronic autoimmune disorders effing sucks and I'm proud of you for addressing it everyday and making the most out of your life. Ty

  38. 2:55 hit me hard. i was diagnosed with type one diabetes in 2012, and apart from my insulin pump nobody would ever know i have it unless i told them. when i was 14 and going through the worst depression i’ve ever experienced, i got tired of it. i just wanted to be a normal kid and i was sick of site changes and shots and pricks and explaining to people, so i stopped taking care of myself. i stopped checking, stopped counting, stopped changing my sites and i was sicker than ever. my A1c was as high as it was when i was diagnosed, my eyesight deteriorated so quickly that im now legally blind, and i got too close to death too many times. invisible illnesses are fucking real and it’s so hard because we can’t see it and neither can anyone else but we’re still suffering and we want to be normal like we look. please take care of yourself zack, it’s so important because you don’t realize just how bad it’s gotten until it’s too late. <3

  39. Hope you’ll get better and well done for sharing your pain hopefully someone will identify and find the courage to fight back

  40. Heya dude, full time lymes disease haver over here. I don’t watch your videos much, but seeing these real, raw but well put together videos about autoimmune diseases mean the world to all of us. Thank you. Please keep being honest.

  41. I have had a continuous headache since I was 7 and the doctors don’t know why, I have no idea what it’s like to not have a headache, we have very different problems but I definitely feel this video (I’ve stopped looking for treatment but might start looking again because of you, thanks for giving me hope)

  42. I have a chronic illness too called dercums disease, top 5 most rare and painful disease in the world. But despite ive still managed to stay happy. Its made me a stronger person. Relate so much to this! Acceptance and distraction is the key. Healing hugs your way!

  43. “It’s got to the point where I forgot how it feels to not feel pain anywhere” oh wow that is dark. I was about to say some dumb crap like “me when my muscles are sore” or “me when I go to school” but no. This isn’t something to joke about and I have huge respect for him ✊? do well my dude.

  44. So inspiring Zach. I don't suffer with any problems right now but this has made me want to look after myself better, perserve and appreciate my body 🙂

  45. i have constant bone pain, when i am too immobile for a while. it stops me from sleeping too. i’ve had it for about 6 years now. my doctors just told me that i just have bone pain and left me at that. everyone around me told me to stop complaining. so i did. i still suffer everyday. i cannot imagine what you’re going through although this was posted a year ago. stay strong buddy ❤️

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