100 thoughts on “Living with a Chronic Disease

  1. Love you for this Hank. I’ve got chronic Sarcoidosis. I can’t function several days a week. I feel so sad about my shrunken life.

  2. So super crazy that you did a video and mentioned my disease, Gaucher Disease, and now you talk about ulcerative colitis which my sister suffered with. Sadly she lost her life at the age of 25 so I’m glad to hear you are doing well. Chronic Diseases suck.

  3. I burped for 5 months straight and when the doctor said it might be chronic I became so scared. It's way worse than you could imagine, I often couldn't fall asleep or focus on my studying because of it. It was like a curse. Luckily I found a medicine that cured me in a few weeks and I am so thankful

  4. Not dealing with a chronic thing, but rather some mental stuff. This video helped me look forward right now!
    So thanks a lot hank ^^

  5. 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

  6. 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.

  7. 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. ❤️

  8. 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.

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

  10. 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✌🏽

  11. 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

  12. 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

  13. It is not true that you are stuck. I have been there and was spontaneously cured 40 years ago. After an emotional breakdown I found I was ok. I still have it but I continue to be ok. So keep hope.

  14. 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

  15. 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

  16. 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.

  17. 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.

  18. 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.

  19. 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.

  20. 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.

  21. 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.

  22. 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.

  23. 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.

  24. 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.

  25. 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.

  26. 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

  27. 3:15 hahahaha do you have any underwear suggestions or knowledge I feel like you would be in the know

  28. 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 ❤️

  29. 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

  30. 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 💗

  31. 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.

  32. 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/

  33. 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

  34. 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.

  35. 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.

  36. 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.

  37. 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.

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

  39. 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.

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

  41. 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.

  42. 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.

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

  44. 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.

  45. 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

  46. 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.

  47. 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.

  48. 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)

  49. 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.

  50. 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.

  51. 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

  52. 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.

  53. 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.

  54. 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.

  55. 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.

  56. 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.

  57. 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!

  58. 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.

  59. 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!

  60. 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 ❤️

  61. 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.

  62. 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!

  63. 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.

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