Torofy Blog

Depression and Heart Disease

Living with a Chronic Disease


Hello, so yeah. Um, I have Ulcerative Colitis. I’m making a vlogbrothers video about it right now, from the perspective of people who don’t have Inflammatory Bowel Disease, but for people who do and for people who have other chronic diseases to a lesser extent, I wanted to make a video. I’ve been asked for a long time by people who have IBD, uh, how I deal with it and how I maintain a productive, and a happy, healthy outlook on life. First, I will say, I have what they call ‘Moderate’ Ulcerative Colitis, which I am very thankful for. ‘Severe’ is often where you have to get your colon taken out, and that’s unpleasant and comes with lifelong side effects, as you might imagine. The colon does do useful work. And I’m even luckier to be in a situation where I can pay for my expensive medication, and I also have a job that allows me to run to the bathroom whenever I want. I’m the boss at my office so if during a meeting I have to be like, ‘I gotta go!’ then everybody has to suck it. And, of course, everybody’s very supportive of that but just the fact that I – I’m the authority figure there means that, you know like, I don’t have to worry about people being like, ‘Well, that guy. He certainly can’t sit through a whole meeting. What the heck is the point?’ What is also is great [is] that I get to have lots of phone call meetings. I do lots of conference calls and if you have ever been on the phone with me, there is probably a 90% chance that you’ve been on the phone with me while I’ve pooped. That’s just a practicality for me. But none the less, just by the fact that I have a a life that is well suited to my disease. I have had this disease for almost ten years now, uh, and I like to think that I have some intelligent things to say about uh, chronic diseases, in general, and having Ulcerative Colitis or IBD in particular. There’s a couple of stages of having a chronic disease. There’s the, uh, there’s the being sick, like suddenly you’re sick and you don’t know what’s wrong, and that’s- can be super terrifying depending on how severe your symptoms are. And then there’s the getting diagnosed part, which comes along with this word ‘chronic’ which inside of it, hiding there, is uh, is this word “incurable” which no one says out loud, but which is the worst word. It means, then, that not only has your life changed, your life has changed irrevocably. It will never go back to the way that it used to be, like you will never enjoy pooping again. That’s not true. Some people are able to control their colitis very effectively. I am not one of those people. I… …nope. At that point, it feels as if this disease has taken over you, that it is now controlling your life, and you can’t fight it because it’s in you. And it seems kinda awful that you now have to spend the rest of your life dealing with this terrible thing. To illustrate a point here, I have a bunch of friends, who have just had kids, and when they first have this kid, it’s like they are looking at it and they’re thinking to themselves, ‘How am I ever going to do all of the things that I need to do in order to take care of this child? It is impossible. How will I ever do that?’ and then an amazing thing happens. They do it. They just do because they have to, and that’s the only thing that they can do. That… is how I feel about pooping in my pants. Before I had Colitis that seemed like an impossible thing. ‘How would you possibly do that?’ And now, I’m like, “Well, I HAVE to.” It’s not like I WANT to I have no other choice! Very literally, like even if I shot myself in the head, I would still poop in my pants. This disease, if it has taught me anything, has taught me that things that once were unthinkable become, eventually, blasé. And to a lot of people watching this, people are gonna be like, “Wuuh!” ‘Cause there’s something unthinkably embarassing about pooping in your pants. To YOU, not to me anymore. People are like, “Hank, why is there a pair of boxer shorts in your bag?” And I’m like, “In case I poop in my pants.” And then there’s just silence. Just…just Stunned. ‘What?’ And to people who have just been diagnosed with Colitis, they might think like they can’t imagine that they can be a person who would be okay with that. But that’s the thing about being a person. I’ve been alive long enough to know that, you know, you go through life and your life will change dramatically, many times in your life, but when I was, ya know, diagnosed with Colitis I had one kind of life and then afterward, I had another kind of life. And those, both of those lives are good lives. Ya know, I was happy back then, I’m happy now. No matter who you are, there will be times when your old normal isn’t normal anymore. You will lose ‘normal’ and you will have a new normal, and that’s what chronic disease is. It’s a new normal. And it may be not as good as the old normal but it’s certainly better than a lot of things could be. I was once in Haiti, and I was at a meeting and suddenly I had to go to the bathroom very bad, and I really didn’t wanna poop my pants there because it would’ve been super embarrassing ’cause I didn’t know anybody very well, and it would have been really inconvenient, too. And probably like… I was like, hanging out with LisaNova and Timothy Delaghetto and I, ya know that would have been really embarrassing. Uh, so I was like *boop* ‘I need to go to the bathroom.’ We were like at, ya know, a village like a rural village in Haiti and people were like, “Are you SURE you have to go to the bathroom?” Yeah. I’m sh- I’m sure. Like I..NOW. So I took the toilet paper and I went and I pooped in this pit toilet that I don’t know whether or not there was Cholera there, but it felt kinda like there was, and I…and I did that. And everybody was super proud of me. They were all like, “Look at you poopin’ in a pit toilet in a rural village in Haiti.’ And now I’m proud of that… So yeah, that’s what I call it. I don’t know if anybody else uses this term, but I call it the ‘new normal’. And, there’s nothing wrong with the new normal because ya get used to it really fast. This also happens when you, like, move to a different place or some, some big thing happens in your life and and, like things living in a way that would previously have been unthinkable to you becomes very, very normal. I think it’s really good if you have more experience with that because the more experience you have with your life changing dramatically and quickly the more able you will be to, you know, handle those changes that come in the future. And they will come, they always do. But additionally, uh, for young people especially, uh, it is important to note… that it’s not like a hopeless cause when they say like ‘chronic’ or ‘incurable’, that doesn’t mean that it will always be incurable and there’s tons of amazing research being done right now in IBD and if you have another chronic disease there’s probably great research being done in that, as well. Um, that has- is showing great promise in that like, maybe I won’t live with this forever. And that’s, I’ve always got an eye on research and that’s something to, that, you know like, cheers me up when I’m feeling down. I especially go and read about it when I’m feeling particularly bad, and it helps me, like, realize that I need to take care of myself because I need to be ready whenever the cure is available to like, have a good strong body to be able to continue like having a new, new normal. A BETTER new normal. And also keep my eyes open to, like, seeing what helps me feel better. Eating later in the day or eating smaller meals. That works really well for me. Exercising, too, helps a lot. But I can’t exercise in the morning ’cause that’s when I sort of feel worse, and so I exercise in the afternoon. And so you just like, keep your eye on things like that and, and you know, I sort of am more at the whim of my body than I feel like a lot of people are. So I… I have been able to design my schedule around that, and sort of have, like nearby the toilet computer time until the afternoon, and then, uh, and then I can go do places. “I can go do places.” I can go do things and go places and like, wait in lines and do things that, you know, normal people don’t have to worry about. But… if you have IBD you know what I’m talking about. So there’s these internal things like anxiety and depression that come along with your life changing significantly in a negative way. But then there’s also, like, external, like, dealing with people who don’t or wont understand you or your disease. Or you’re too embarrassed or you don’t like feel like – you feel like it’s an invasion to be talking about what’s going on uh, with the inside of your body, which I totally understand. And they blame things that are you know, you can/would/should be blaming on your disease and they blame them on you. And that’s, you know, that’s difficult and to that I say, you can try and be honest and you can try and like, like for me, I become very open about this with with my friends, like I will say, “Excuse me, I have a chronic disease.” and then I will like, walk out of the room. “Pardon my chronic bowel disease.” And I encourage you to do that at least, with your friends and family, if not also with your coworkers, if you can find that- like a way of communicating that. But in general, there will always, always, always be hard relationships in your life, and no, having a chronic disease isn’t gonna make that any easier, but it might not necessarily make it that much harder. I mean, the people that you’re gonna have the hard times with are the people that you’d have the hard times with anyway, because they you know, they’re selfish. But I like to keep the sort of burden of understanding on myself, like, I like to try and and like just be really pious about this and say like, “I’m going to try and put myself…” and this is extremely hard when you’re frustrated…and in pain and anxious and embarrassed. Uh, but I see it as a kind of mental exercise, like I try and lift myself up a bit out of my body and try and, you know, understand the situation as fully as I can. You know it leads to a little bit of, like “I feel like I’m better than the person who is hating on me,” which is always, uh, it might-that might not be healthy, but it’s probably, it’s better than the alternative of just screaming at them. And also I’ve generally found that that leads to better relationships. I’m very lucky to not have to worry about that stuff so much. I mean, Katherine is, of course, the most supportive person you could ever hope for to have in a marriage, and, uh I’m very lucky to have found her, um and hopefully she would’ve married me even if I had had Colitis when we got when we, when we found each other, but um she stuck with me through it. I have never felt like it has been something that has got in the way of our relationship or something that she resents me for, or anything, ever. Ever. And I, like I honestly think that it’s because she doesn’t, like she, she doesn’t see that and I’m, like getting a little bit teary now. But, it’s… just so fantastic to have had her NOT like see this as a a barrier at all, and could not see it as a challenge even. She just sees it as like, she’s sad sometimes that I’m in pain, but it’s… I’ve been, that’s very, very lucky. So yes, it can be depressing and anxiety-inducing and embarrassing to have any chronic disease, specifically Inflammatory Bowel Disease but, um, there are people who understand what you’re going through. There are support groups online. I can’t help people individually, I wish I could but I, I even when you narrow it down just to people with IBD, there’s too many people to interact with specifically, and so, I apologize that I can’t do that. Yeah, your life is gonna be a little bit different than someone who doesn’t have a chronic disease. But your life would be very different if you were born in a different country, or if you were born with a different skin color, or if you were born with a different amount of money in your bank account. Like there’s all these things to wish weren’t the way that they are, but that’s never gonna be a fun way to live your life. And you’re never gonna feel good if you wish your whole life that you were born with an extra zero on the end of your family’s net worth. But most of us don’t spend time doing that because it’s not worth spending time doing. Just like it’s not worth spending time wishing you didn’t have a disease that you have. So, take care of yourself, take care of your relationships and I hope, uh, that you feel better, and that this video was of some use to you. Goodbye.

100 thoughts on “Living with a Chronic Disease

  1. I can't believe it I've been following hank for a year and Ive just found out that he has ulcerative colitis. I also have ulcerative colitis and he's been helping me out a lot in school thanks to Crash Course and I just want to say thank you so much Hank

  2. I remember watching this 4 or 5 years ago. Since then, since early 2014, I've had a headache. One headache. Unceasing pain 24/7 for almost 5 years now. For no apparent reason and no end in sight. I remember going to bed early the first day expecting it to be gone when I woke up. But it didn't and at this point I don't think it ever will. So I just keep on living my life. When I tell people about it, they usually react with a mixture of pity and awe. They tell me that they cannot imagine what it must be like. That I'm so strong for continuing to live a normal life. I don't think I am. I didn't really have any other choice but to accept that it was my new normal.

  3. I know this video is old but… My grandma has ibd, and had her colon removed. And my dad has ibd that flares up a lot. I've always had ibs, for as long as I can remember. So it's not like my new normal it's just is my normal. Ive never had a day where I don't feel ill. In school teachers wouldn't believe me and Id have to tell them honestly that I was going to crap myself. And seeing that hank has ibd, which I had to get checked for after a scare. And myself and my dad's side of the family having chronic stomach problems, shows that it isn't as lonely as you might think. ❤️

  4. Thank you for this video.

    My wife and have have EDS (government shut down only long-term study halfway during sequester, no hope in sight). Our lives have become doctors appointments, hospitals, home IV medication, 4 IV poles in our house, strokes, surgeries, talk of feeling tubes, spinal pumps, home nurses, etc. People never understand how we do it. We try to make each other laugh and we make it through. I also have brain cancer to complicate things. I was premed until I got really sick, now my family lives on $1127/month for a family of three. We've gotten a lot worse since they cracked down on opioids. You really put things onto perspective and gave me a better way to both wrap my head around and explain it.

    Please do more videos like this.

  5. Papaya and its seeds. It kills the parasites that live in your stomach and intestines. Garlic, pumpkin seeds, parsley. Apples and its seeds.

  6. 22 and blessed with Rheumatoid Arthritis, where to buy a new body from? Preferably one that's designed with xy chromosomes but willing to negotiate.
    Offer stands till I no longer can cause then it's definitely goodbye time for me✌🏽

  7. I JUST WATCHED AN AD TRYING TO TELL ME THAT "not having microbiome balance can cause IBS" NOTHING CAUSES THIS CRAP DIRECTLY THE POINT IS THAT WE DON'T KNOW

  8. every time i have a flare up, i come back to this video and it makes me remember that things are gonna be okay. Thank you Hank <3

  9. I don't know how my condition is called in English, but it's hard for me to identify what someone is saying and it gets extreme when there's any type of noise around. I hear every sound as loud as I should, but I can't process what I hear properly.
    It's lot's of fun (sarkasm) to be 20 and having to ask people to repeat themselves 3 times. And even when I explain why I didn't respond to something (bc I didn't fricking hear it) or why I seem to not pay attention in group conversations (bc there's so much noise I can't listen) people don't understand.
    "You're only 20 how can you be hard of hearing"
    "I bet you ruined your ears with those headphones and all that poud music" (I didn't, it just happened)
    "You only pretend so I don't get offended because you didn't want to listen to me"
    I've actually been yelled at by an older person because how dare I claim to have a condition when I don't look sick.
    I've learned to live with it and not give a shit about anybodies opinion but people can be assholes

  10. I was 14, I missed about 65% of school as an AP student and musician. I lost myself to headaches. I couldn’t play music I couldn’t read, and I still struggle. To get out of bed is unbearable. The doctors have just told me “no medicine will work” because I’ve tried nearly anything and they know I cang get any relief

  11. I have a chronic eating disorder, and it has impacted my intestines and digestive system to such an extent that I have pooped in my pants and puked and etc in so many places that it's not even embarrassing for me anymore. The worst part about having a chronic /eating disorder/ is that people don't count it as an illness. But it is. It's my normal and that's just how my life is. I watched this video for the first time a few years ago, when I was pretty close to dying. This video made me realize that I can live with my illness instead of dying from it. Thank you Hank.

  12. I was about to have brain surgery, and was totally ready for the recovery process and my life changing with this new VP shunt (I've had one all my life so the change wouldn't have been that big anyway). Then it turned out to be a false alarm, a temporary blockage in my current VP shunt. The neurosurgeon told me it could be another 30 years until my shunt actually stops working for real. Now that I've been home from the hospital for nearly a month, I'm still kinda baffled that my life didn't change after all. Like I could actually finish my bachelor's thesis, get my masters and possibly PhD, and work in my dream job for years before my shunt had to be replaced again. I could actually live, instead of just studying which is what I've done for most of my life so far.

  13. I was diagnosed with Duodenitis years ago, and now officially Crohn's disease. Hank, your perspective on living with a chronic illness, and your incredible insight into life in general, has really helped me. I appreciate all of the life, science, and other videos that you put out on your multitude of channels, as they keep me distracted, but also more informed, in my own life struggling with health problems. Best wishes, Bill.

  14. I know my disease is not as bad as others but rosacea has changed my life a bit. I have to follow a special diet no bread no potatoes no tomatoes low sugar no chocolate. No hot rooms avoid heavy sunlight bending down or heavy exertion, crying and stress. And if I don’t avoid all of these things it feels like a hot iron is pressed to my face. I have adjusted to this but it was debilitating and painful when I couldn’t control it.

  15. I've been suicidal for a over a decade which with the advent of social media has isolated me and made me intolerable to the point where no one in my family or online or in real life can put up with me. It has robbed me of ten years that would have been important. Coming from a broken abusive immigrant family and moving a dozen times during my education years has been hard and all these years I haven't been able to enjoy the priveleges of living in modern first world countries. And although I've been tormented by abuse from family in the past the past decade I've actually been tormented by my own brain to a far greater extent than anyone's abuse towards me.

  16. bro, do sun gazing 10 mins a day, during first and last hour of sunrise and sunset respectively…western shitty diet has ruined you…tell your brother to do the gazing as well – his OCD will be cured in 6 months.

  17. There is this point where you feel as if (and people may treat you like) you are your disease. It helps to remember that you are not. Therapy can help.

  18. Yes, I've talked about new normal a lot. When my husband became seriously ill, every 2-3 months there was a new normal. You grieve, you adjust and you try to keep on living a good life without regrets.

  19. I struggled to deny my new normal for years. Now, i’m struggling to accept it. I know acceptance is essential but it’s taking me some time. Thanks, Hank, for sharing your story and perspective. Y’all are the best.

  20. Hi Hank, I know this is an old video but I just wanted to say that it helped me a lot to hear someone talk about living with chronic illness like this. I really appreciate your visibility and your support through that with encouraging words. You never forget to be awesome and I thank you for that.

  21. The hardest part is regularly being fully active and feeling energized and making plans for the following day and 3 hours later your basically bed ridden for the following two days

  22. I have endometriosis. It took me years to get diagnosed because my symptoms weren't 'measurable'. I had a lot of pain and I was constantly tired, but because there was nothing specific enough I was just ignored and told I had a minor case of IBD and that I get sick easily cause I was stressed, and that maybe if I stopped focusing on it my period wouldn't hurt that much… Either way I just want to say this video really helped me. The idea of a new normal makes all of this okay again and I am finally looking forward to my life again. I can't imagine living with this pain and all the medication and the regular surgeries and whatever but now I kinda have faith that I will be 100% okay with that one day. The research for a cure has basically only just begun, because off course, the main symptom is pain and infertility and it only affects women… However, there are clinical trials, there are options and there is hope. Thanks for being so open about all this, I hope I one day have the strength to do the same ❤️

  23. He has a typical symptom of food intolerance. I wonder if he kept a food diary. An elimination diet may create a "New Normal". https://www.youtube.com/watch?v=sda3NzhZo54&list=FLWsi6j48w_9gu7fWjqk1AgQ&index=10

  24. I had no idea that you had a private channel. Thank you for making this video. I’m going through a lot right now and I’m trying to figure all this out. Luckily I work from home too so I have it easier than most people. You are smart and adorable. I love how informative you are. Bless you 💗

  25. Your chronic disease is "leftardism" and it's symptoms include you being a stupid cunt on twitter confusing A's with I's because it's not like there's only 26 letters in english and we can afford to get away with banning words for being "close" to other words. Truck? You're out. Hag Wag Tag Bag Lag Mag… These are all out, by your leftard logic!

    You are chronically ill, it's called "leftism" and you should seek help before you make any more of a fucking fool of yourself on the internet.

    Socialism is for Figs. Get over it.

  26. We started a new group that allows discussion in a more relaxed tone. Its not pro- anything but pro- getting everyone better ! No one will be banned from our group . We want to help people thats all. We have pointers for fighting fatigue through vast experiencehttps://www.facebook.com/groups/460858997999634/

  27. i know this is a really old video, but i just discovered it and it made me feel a lot of things. i have UC as well. i was diagnosed a little over a year ago, at 17. watching this and hearing you talk about your experience with it, and having it come from someone who i have looked up to for so long… it makes me feel less terrible about it, honestly. it’s a really hard thing to live with. my whole life has changed so much over the past year, but i’m trying my best to work out a way to survive and thrive so that i don’t have to suffer every single day. it feels a little less scary to know that there are many others who are dealing with this, and that there is always hope for the future. so thank you for this video, it means a lot

  28. I found this video 3 years ago when I was in a medical scare. It brought me comfort when nothing else would. Years after, I've been diagnosed with an autoimmune disease, and tomorrow I'll be getting testing for another one, which I may have. I still return to this video when I am scared about all of this- thank you for this gift to the universe.

  29. You should look into fecal transplants. Looks promising. Cant say I'd let them do it to me. But then again I don't have UC.

  30. I have crohn's and I definitely call it "the new normal". Also, people who can wear white pants WITHOUT fearing pooping in their pants are too powerful.

  31. What if, you knew ahead of time that your life would be filled with millions of aches and pains, emotional roller coasters and living with only a Penny a day life style, yet were also given the imagination to be the King of The Universe, arriving back after a long time away, to find Humans had taken over your Garden of Eden. U'd Just be all glad and happy?? Or what emotions would you feel? Smiles, I in my life have had the ability and the creative composing of verbal story telling, opened that box and explored it. Chronic Disease currently amoung others is diabetes … @BioWebScape was here, see my tweety bird chirps and blog in that profile, @ Hank, my girlfriend supports me too, I also write her public poems on my blog last one in Poem for her 828…. in the series. Yes over 800 poems to one single lady all signed Happy Birthday Babe, as she is brand new each time she passes through a door way, always Perfect for Us.

  32. Thank you, Hank. Your candid description of IBD – the truth of it – does help make the topic less verboten.

  33. Man… I don't have any of these chronic diseases, but that part about the new normal? That helped me… I'm gonna be moving off to university to a year, and as someone who grew up homeschooled in a large, tight-knit family, that's scary. But that thing you said… "the new normal" it makes me feel better about it. I'll adjust, faster than I probably feel like I will right now… And you know what, I think the new normal might just end up being better.

  34. Katherine stuck with hank and now he'll stick with her and support her through her allergies. They are truly goals.

  35. Hank, I have in short term an "alzhiemers (terrible spelling) like auto-immune nueroencephilitis brought on by dorment west nile, lyme disease, and mononucleosis which were all given to me back in 2003. Technically, I'm a freak. Nothing works normal on me, and I have horrible reactions to things that people don't normally react to. I am an aknowledged guinea pig, and secretly proud to be a freak, because the subject to study is myself, even though it also has it's horrific moments. So, you keep going and document. You may be a key to a cure in the future.

  36. just bt-dubs, everybody would shit their pants if they shot themselves in the head cause you automatically evacuate your bowels when you die, so its normal.

  37. Eating a lot of vegetables and grains high in fiber like whole-grain wheat and broccoli might help.

  38. I have a very close friend with IBS and he lost control of his bowels on the way home from shopping the other day. He was so humiliated,even though no one saw this happen. I was so moved by your video,I sent it to him.

  39. I have Fibromyalgia, and when we first found out about that we were just like "naaaaah I don't have that incurable mess of a disease" and now I live with pain that would ruin people who don't accept it as a "new normal" so yeah, absolutely. You'll be poopin' your pants, I'll be over here talking about how it feels like I'm constantly being hit by a mack truck in every inch of my body. mostly because describing pain can help one cope with it

  40. 7 years later and this video is awesome. You're awesome. Thanks for being you and doing your best to reach out and help as many people as you possibly can.

  41. Fuck you. You do not speak for my sister who has the same condition, and you do not speak for me, who has a different chronic disease for 24 years known as diabetes. Strait up fuck you.

  42. Hey everyone, if it took you a bit longer to get used to the New Normal than Hank is talking about, that's ok too. Everyone is different. It doesn't say anything about you (although it might well say that a bunch of crappy things happened within a few years of each other, that's a typical thing that makes New Normals more difficult)

  43. I knew this person who's life seemed to be in a constant state of flux, where they were busy, and moving all the time. I don't know how he did it. It seemed that he was either moving, going, or sleeping when he stopped. Then he met someone who was exactly like him. It was so weird. Have you ever seen some eat every meal while walking to some place? I thought, "Well, they will never have normal life." Then they got a dog. Bad Idea I thought. Wrong. Dogs seem to be born, to be on the move. They drove a hatch back that they kept the back seats down. They would leave the house, the dog would jump in a head of them through the car door, and took up the position in the back. The dog worked. Then they got a kid. Have to change now. Nope, kid is just like the dog, he seems to know exactly what the parents are doing at every moment, and adapts on the fly. People can adapt to most things.

  44. I know this is old but thank you Hank for this. My wife is dealing with this and your words have helped and I appreciate that and you.

  45. As someone who was recently diagnosed with epilepsy, I have a new appreciation for this video. When I last watched it, I did so to better understand those around me who dealt with chronic illnesses, such as my wife who deals with chronic migraines. But this time it had new personal meaning for me as I come to grips with what having epilepsy will mean for my life. Thank you as always for your clear thinking and great insights

  46. I think it would be really interesting to see a collaboration between Hank and Hannah Witton. Both have colitis but seem to have similar but very separate experiences with their disease. I think it would be really cool to see them discuss the impact on them and their lives and the differences between their experiences.

  47. Just saw this one. 6 years late! Well I'm 52 now so it might look like I'm late for a lot of things, but that's how life is, you learn as you live. I learned I have a chronic pain some 6 years ago (4 years after its first attack. It was this mysterious pain shock hitting my face regularly and no doctor could tell what it was. Until Google did :)))
    Trigeminal Neuralgia is a nasty pain. No proper cure yet. There are groups for discussion and moral support (like the ~19.000 members in the Facebook support group).
    I had so many ups and downs trying alternative cures. Finally surrendered to the only medicine that works (Carbamasepine) and that makes me sleepy alongside so many other side effects. I can function for some 6-10 hours each day.
    And just as I was slowly accepting that my life will never be the same… Here you are bravely talking about your disease and your "new life"!
    Thank you! From now on I will call mine too a new life. It's different from before and I can't do many things I could… but it's my life. And I hold strongly to it.

    (I might've cried for an hour today waking up with a surprisingly strong pain jolt that lasted also an hour… but I'm now at my studio creating nice little ceramic tealight holders… so why stay with the bitter part if there are also sweet parts along the way? :))

    Thank you! 💗
    With best wishes.

  48. There are times it’s kind of impossible not to wish being healthy again. It’s not useful, but it’s ok. Being chronically sick is hard, but we want to keep living so acceptance is the only way… not much of a choice, so, it’s bound to be a bouncy road sometimes.

  49. I'm chronically ill and collecting new conditions like Pokemon since 2016 my new normal keeps changing. I really admire Hank's positivity. Having people not understand has been happening with me for the past 10 years. Invisible pain conditions, connective tissue disorders, gi issues, musculoskeletal issues… The list keeps going. I guess you just wake up every day and just make the best of what you can. Do what you can when you can and that's it.

  50. I'm curently transitioning into a new normal. My inappropriate sinus tachycardia is getting worse despite medication, so it seems like I lose something everyday. Just when I get used to what I can do, I suddenly can't do it anymore. Rinse and repeat. I'm seeing a doctor about it to try and figure out how to stop it from getting worse, but it could take years to get answers.

  51. Do you carry paper products/TP/napkins on your person, just in case? I picked up that habit both from having chronic sinus problems, but also from traveling abroad and having #2 issues unexpectedly. A back pocket full of paper napkins has made my life so much more convenient so many times! And thank you for your honesty about your condition, and thank you so very much for all the incredible content you produce!

  52. Try adapting to a new normal when your whole nervous system is inflamed and constantly producing anxiety, depression, fatigue… I’m just jealous of people who can at least do something in life and not be half- or fully bedridden. Suffering really puts everything into perspective.

  53. DUDE SAME i had no idea you had it, Hank! O_0 i take Lialda and Azathioprine for it as well as kinda watch my diet. since my income is so low, i get my meds through SHIRESCARE. just an fyi. thanks for this!

  54. Hank I’m so happy and grateful that you made this video. I was diagnosed with Crohn’s as a teenager about 7 years ago now, and I’ve never had the “new normal” articulated to me so clearly — I’m SO going to use that to explain things to people from now on. I’ve definitely had a lot of moments in flare ups where I’ve despaired and felt like something has been stolen from me, but I also feel like it’s given me so much empathy, sensitivity and an ability to understand and connect with people on a deeper level not just who have IBD or other physical conditions but mental ones. I try very hard to be optimistic and I’m lucky that most of the time my brain has a positivity bias around most things, but I’ve just come out of a rougher patch, and this video made me feel SO seen. Thank you, Hank ❤️

  55. This was very encouraging to me, Hank. I've been dealing with GERD (chronic acid reflux) for over 3 years now and it's been daily pain pretty much, leading to giving up things I used to enjoy (alcohol, coffee, certain good foods, eating dinner, etc.). Thank you for the good thoughts.

  56. Thanks for the talk Hank! I acquired R.A before 30… it's not so easy with a new normal. This video gave me alot to think about. Feel better!

  57. I was born with IBS mixed and have struggled with it forever. I have tried different laxatives and found no relief. Eventually I found out that fried onions and chili cause my guts to cooperate but they make gas and can cause ulcers in my duodenum leading to my needing to take a daily antacid. Then I worked out that peppermint oil rubbed on my lower abdomen deals with the gas and cramping quite effectively. My GP still wants to confirm the IBS mixed diagnosis with a colonoscopy, but it is the least irksome of my chronic disorders (believe it or not) so I'm happy to wait for now.

  58. i'm 16 and i use a cane in my daily life because of chronic pain and hip instability. thank you for this, hank. i've found a new normal and it isn't bad, it's just different. i hope other chronically ill and disabled people can find that, too

  59. I just happened upon this video, and BOY! I am very glad I did! I was diagnosed with ulcerative colitis and Crohn's Disease about years ago. This has been my "new normal" since then. Pooping my pants, canceling plans at a moment's notice, etc. I developed a real social anxiety for many years, and became very comfortable with talking about gross stuff… like poop, and pooping my pants.

    Thank you for sharing this, back when you did.

  60. Man I got diagnosed with UC at 13…that was really rough. It's also moderate though, and I've made strides, but it really screwed up my teen years even more than they already would've been.

  61. You are my favorite YT personality and knowing this about your life really humanizes you. Opposed to you not being human?? But my lil sis has Ulcerative Colitis and almost had her colon removed last year. She is doing better now and I hope you have more good days as well. Thank you for all the content you have contributed over the years!

  62. Just came across this. For some reason our society does not understand what it is to have a chronic disease. We live in a blame the victim society.

  63. I have been diagnosed with severe ulcerative colitis for 3 years now and now live with an ileostomy because of it and honestly I have watched this video over 30 times. For some reason this is the only video that can make me smile on even my hardest days!! So thank you for this!

  64. My sister had it long ago. It was just part of every day life. We all made changes to ease her life. She made changes and took medication to minimize symptoms. Hers started nearly 40 years ago but eased up about the last 5 years of her life.
    On the other side of that is the young man who worked at a gas station near our house. His had reached the point he opted for the ostemy bag. It let him reclaim his life.
    My best to you

  65. "I hope that you feel better"
    Thank you… Two years ago today (Christmas Eve), I was in so much pain I could hardly think… Today? More annoying than anything… BTW, I'm speaking from a Fibromyalgia point of view…

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