Chronic Illness | Hank Green & Kati Morton


Kati (K): Hey everybody! I have a wonderful, special guest. Hank Green is here to talk with us about his experience with chronic illness. Hank (H): Hi Kati. How’re you doing? K: I’m good, how are you?
H: I’m good. Funny thing to say after you’re like “Let’s talk about your chronic illness…I’m doing great! No I am actually, particularly my illness has been pretty good lately.” K: So, just so I understand and, for those of you out there who don’t know, Hank suffers from… H: Ulcerative colitis K: Similar to Crohn’s?
H: It’s similar to Crohn’s, but Crohn’s is expanded…so, it’s an autoimmune disease; it’s an inflammation of your digestive tract. Crohn’s is basically all the way down – from the mouth on down. And it can really be, yeah, all the way, whereas colitis is just the colon. K: Okay.
H: So, people are like “What d’you mean? Tell me all about it!” So you kind of think of it as like, er, have you ever gotten hives?
K:…no. H: …or like an insect bite?
K: Yeah, or like rashes.
H: Yeah, so it’s like that, except … in my colon. And it can get bad enough that it then ulcerates and bleeds and is…yeah. K: Gotcha. So, yeah I read a little bit about it, so at least I kind of understood it – don’t google it and look at images at all! Very traumatising! I’m not a doctor and it’s very overwhelming. But, it sounds like one of the most common symptoms is bloody diarrhea. H: Yeah, that’s like the first sign. Well, generally if that’s happening, go and see a doctor! There’re lots of bad reasons why that could be happening. One of the mid level reason that isn’t like “You’re gonna die soon” is ulcerative colitis. K: Because I have a lot of viewers who suffer from all sorts of different ailments or chronic illness – ways that you best manage? I know you talked on your channel – and i’ll put the links to the videos I mention in the description box – about how it can be really hard to deal with it sometimes and everything from embarrassment, depression, frustration, all of those things. H: For me, I think that partially because it happened somewhat slowly and also, I had a very supportive environment and because I was older – colitis often happens to people younger than me – I was able to deal with the embarrassment more easily. It’s sort of like the first time you poop in your pants in your life — that’s never gonna be a good day — but like the 8th time it’s like “this is a thing that happens!”. K: This is a thing that happens — I just have to be more prepared! Extra pants and underwear with you at all times. H: Well, I think that the number one thing for me is just the lack of control. And you want to have that control. And you think you’re going to find a way to have it. And, if only I could control myself — I could control what I eat, I could get on this special diet that everybody says is good for colitis — and if only I could make myself do that, i’ll be okay…or if only I could make myself take this, like, fine I’ll take the medication that has the really bad side effects. H: Then I should be able to control it. But sometimes you just can’t. And those months when I’m trying really hard and it’s not really working — that’s the worst. Where it’s like, I can’t live the life that I want to live. H: Also, I get to structure how and when I work. The mornings are usually very bad for me so I often don’t go into work until the afternoon. And that’s just a ridiculous amount of privilege I have with dealing with this, but it’s that frustration and knowing that when I can’t live what I see as a normal life, the thing that I’m imagining is a normal life — isn’t normal for me. K: Yeah, your norm is going to be different. H: Yeah, that’s just not my norm(al) anymore. H: And that’s hard. But, it’s kind of almost a grieving process. It’s letting go of your normal life, and being sad that you lost it, and then finding a way to move on. K: Yeah, and I think that’s a message that a lot of people need to hear like…things are going to change in your life and there are going to be things that are out of your control and I think that, allowing yourself the time you need to grieve is important. it’s going to be different from everybody’s experience. K: I even have a video on grief and grieving. I talk about how odd it can be and how it can come and go. There’ll be days where it’s really shitty and others where you’re like “Oh, it’s pretty good – I’m feeling pretty good today!” K: And know that that’s all normal. Just make sure you give yourself the time. H: There are a lot of things that have gone right for me, and also some things which have gone wrong for me. And we’re all somewhere on an infinite number of bell curves — and i’m on the shitty side of the ulcerative colitis bell curve, but i’m on the really good side of the having-a-good-family bell curve. K: Yeah! And there’s a lot to be said about support systems. That’s something that I always encourage my viewers to create, or appreciate. We can create our own family (if family is something that isn’t supportive to you). But that can definitely be a great support. H: And knowing the way I try to maintain my digestive health, I also try to maintain my relationship health, because that’s so important. K: Agreed. H: Especially when you have bad things that you have to deal with. Knowing that I shouldn’t be trying to protect the people I love from this and trying to hide it from them, because it’s a pain for me to deal with and I don’t want to expose them to that BS — H: But knowing that they want to be there for me — and I need it. You can’t do it, like, if it’s hard, you can’t be the person that’s like “I can do the hard thing all by myself and nobody is going to know that it exists.” H: You have to maintain your relationships — for the people that you love and also for yourself. K: Letting people take care of your when they offer it up, I think, is something that can be difficult to accept but so wonderful once you do. H: Mhmm. And I don’t even feel bad anymore when — I don’t know how to say this without feeling like a total jerk. H: There’s a little bit of like “I have this disease. And it makes my life less good. And thus, my wife is really nice to me when i’m sick. She takes care of me and — and I like that. H: I like that she wants to do that and interacts with me in that way. I like to be taken care of. But for a long time I felt really bad about it, like, I felt I was kind of exploiting my illness. When I saw her being sympathetic toward me and I felt good about that sympathy — I feel K: You feel guilt?
H: Yeah, I feel guilt. It’s like “I’m feeling GOOD because of my illness right now, because otherwise my wife wouldn’t have a reason to have this sympathy for me right now and I wouldn’t have that feeling of like — this person loves me!” K: Yeah that’s a whole other… H: Like I need proof all the time! K: Everybody does! I feel like, that’s like the human condition. And that’s why we strive for connection and people and communication… H: The most important thing is the medication that I take. H: Finding good medication — the medication i’m on is a little but dangerous, so I have to make sure that I go in and have tests…
K: Oh, like blood levels…
H: (nods)…and all that stuff. H: And then, it was really frustrating in the beginning because I didn’t have health insurance…
K: Oh.. H: And it’s like $300 a month, and there was stuff that I could have been taking that I couldn’t afford at all… H: And then, when I finally got health insurance — thanks Obama — I was able to get this stuff that basically, when i’m starting to head down the slope (because it comes in waves, like flare ups and then you’re in remission), so when I see a flare up is starting to happen, I can take this stuff and it’s REALLY expensive. H: Like, to buy a 30 day supply of it is like $2500.
K: Holy moly. H: So I can take that stuff now and it’s like $20.
K: You’re kidding! H: Yeah, so I can take that stuff and take it for like 3-5 days and prevent myself from going into a flare up. K: So, are there things when you’re having a particularly hard time, other than family — have you ever been in therapy before?
H: Uhuh (no)
K: Do you go out and get social more? Are there things you do to try and help yourself feel better — or have people come over I guess is more comfortable for you. H: No, erm, I work.
K: Is that how you cope, kind of? H: Yeah. Yeah, I have this thing where I feel like, I don’t want to be useless. I want to be useful to people or the world. K: Uhuh.
H: So that makes me feel really good. And also, there’s this dumb thing I have inside of me where i’m like, if I can do it WITH this disease then imagine what I could do WITHOUT it, kind of thing?!
K: Yeah! H: I feel really good like, I can accomplish something even though i’m working around this disease. Of course, it being one disadvantage among the many advantages I have in my life.
K: Definitely. H: But I do feel like I — I don’t know why — but I tend to go into exploration of ideas or implementation of ideas…
K: Okay, so when you’re having a hard time… H: Yeah.
K: So YouTube gives you kind of a purpose(?) in a way. And I think that’s the cool thing about doing something that you’re passionate about, spending time in your life that fulfil you and make you feel better and that’s something — even as a 32 year old whose been working since she was 16 essentially — to realise that in the last 2 years, how much better I feel doing something that I love. I know that that’s a privilege that I hold which not everyone is able to. K: But if you can find something, regardless of whether you get paid of not, I think there’s a part of the human condition which — it’s important for us to do things which help us feel better. And fulfilled in some way. H: Yeah, for a lot of people (it doesn’t have to be, but) it’s producing in some way. And I think that that’s pretty rewarding. And i’m kind of sad that we live in a society where jobs like that aren’t very common. K: But I just want to thank you for taking time to talk about it. I know it’s not the happiest topic, but… H: No, but I’ve done it in a couple of places over the years and it’s very rewarding when I hear that people have been helped by how I think about this stuff. K: Yeah, and I think it is helpful — I know I hear it from a lot for my viewers — that they want to hear from people who are going through similar things. We like to know we’re not alone. K: That’s what my channel is about. We all suffer from the human condition in one form or another and the more we can talk about it, the less scary it can feel. H: Absolutely. H: And I feel privileged to have outlets to talk about it to people that will listen to me. K: Yeah, and I’ll leave links (in the description) to videos where Hank has talked about it before. Thank you again for your time. H: Yeah, absolutely. Thanks for doing what you do. K: Yeah, of course. I love it. I’ll see you guys next time, bye! H: And a lot of the things that I do, I feel like this is probably just me trying to have control over my life…[sirens, dogs barking]
K: …somebody being rescued.
H: …yes, important work. Camerman: Dogs in on it.
K: He’s so excited. H: That’s the way of the world.
K: [laughs] Subtitles by the Amara.org community

100 thoughts on “Chronic Illness | Hank Green & Kati Morton

  1. I can so relate to the guilt about appreciating people being kind to you because your illness. And also the always needing proof that people love you. Amazing collaboration, thanks, Hank for opening up, and thanks Katie for listening and asking the right questions!

  2. i have fibermialga and intestinal cystitis. its impacting on my life alot. these are both auto immune diseases. Im now losing my eyebrows. some days i just cant get up out of bed. Being in physical and emotional pain is not fun!!!
    he is so right about grieving then moving on and adapting to what is now. thanks for this video. love you kati 💙

  3. Quick note to say I really appreciated (in addition to the rest of the video) the part where you two started talking about vocation and how important that is — doing our thang, so to speak, in the midst of challenges. Of course, the two of you are living out your vocations right here on video 😉 thanks for inspiring me to finish my LAST GRAD SCHOOL ASSIGNMENT!

  4. thx making this video guys it really helps to hear how someone else feels through chronic illness we recently found out that i most likely have epilepsy and have had it my whole life it often times feels like no one understands even my family often times they say that i should be used to it since ive had issues my entire life but im not and it's still really hard when other people have to do things for me during my flare ups and when i can't go to school or do my work

  5. You should have John come on! That'd be awesome. OCD representation and the interesting contrasts and similarities between dealing with a chronic physical disability and a chronic mental disability. 🙂 Love the video as usual!

  6. Have you done any videos on Dyslexia? Would love to hear your knowledge on this and helpful tips. I also have a chronic illness and appreciate you addressing this subject.

  7. Kati/anyone, I know this is not related to the video, but I recently saw something that sparked my interest. I have very possible depression, and it was a brief description of psychotic depression that stood out. I have had "hallucinations" for about a year now, they happen mostly when I'm in a dark area. various types of mutilated demonic-type figures would appear in my vision and I could tell they're fake, but they don't go away when I try to stop it. only distractions make them go away. I never thought it was that important of a thing until I saw the description, now I am really curious about what this is and why.

    (right now as I type this, I keep seeing a figure slither overhead and unidentifiable creatures in the mirror.)
    (another side note, if I'm having overwhelming feelings of depression or urges to harm myself, I often see the figures reach me and grab me from behind in the mirror. )

  8. Thanks for this.
    I have Crohn's (pretty badly) and most of the time I deal well with the curve balls it has thrown over the last 25 years, since I was diagnosed. I have an awesome family and friends.
    I am not very good at letting people care for me and it has hurt my relationships.
    I am trying to rethink what meaningful work I can do. I miss being able to immerse myself in work. I am depressed which is not helping me think clearly, as well.
    This gave me a lot to think about and I appreciate your honesty, Hank. Thankyou Kati for facillitating this forum.

  9. Thanks for sharing Hank and thank you for making this video Kati! I have Crohn's and I know that it's awkward to talk about, but when you have an illness that people can't see it's hard to explain why you can't do certain things or eat certain things or why you're so tired all the time, etc. <3

  10. I began dealing with chronic illness about a year and a half ago. It's been great trying to figure out what is going on, but at this point I know I have POTS, EDS, anxiety disorder and depression along with possible autoimmune (lupus). The anxiety and depression were a result and got really bad to the point of being super suicidal. Luckily that's been fine now. Things health wise have been declining. I take 26 pills a day and have to get IV infusions twice a week. I'm happy to have things like the pod cast you and your brother do to occupy my time and distract from what's going on

  11. Yay! I go back and watch videos of Hank talking about his illness a lot, because it helps me think positively about my condition when I struggle with flare ups and fatigue. I think part of that is knowing he is a productive person, while still dealing with this stuff helps me see that that's possible. So thanks Hank!

  12. I have fibromyalgia and so much of this video resonated with me, especially when Hank talked about his feelings of guilt when his wife takes care of him (I get that a lot with my mom when I'm having a really bad pain day and I can't move and she has to help me out and I kind of feel good for a bit but then I feel guilty for feeling happy about my illness and it all spirals). Thank you so much for making this <3

  13. Saw Hank tweet this and I'm glad I watched it 🙂 Fantastic video! I'll definitely be checking out more of your channel 🙂

  14. so great. I have some chronic illnesses myself. when I got this illness I lost all my friends. it is very confusing about all of the emotions that hit you when you get something permanent. but I have a couple of questions. one is what do I do if I don't have that support group? and how long do these waves of emotions hit? I'm 3 years in and do really good mentally but once in awhile get blue.

  15. Thank you. I just have chronic pain but it's nice to be reminded that it's ok to have bad day and that there are examples of what I would call success

  16. Hank is one of the people who have inspired me to talk openly about my own chronic illness (a rare vasculitis called Takayasu's arteritis) without feeling ashamed or embarrassed about it. It's so important to know that you're not alone when you have a chronic illness and I just have to say THANK GOD for the Internet for existing. Without this community of fellow "spoonies" (what we call ourselves) I would feel completely isolated and trapped in my own body.

  17. Katie! I don't know if you've ever heard of the Spoon Theory, but it relates a lot to this video and applies to anyone suffering from any chronic illness. Awesome article to read if you haven't :~)

  18. I have degenerative disc disease and, at 17, I'm finding it so hard to cope lately.
    Thank you both ❤️❤️

  19. On the plus side of having Crohn's, I have really refined my sense of toilet humor. It's definitely helpful to have a good support group that isn't offended by a fart joke every once in a while.

  20. Hank said so many things that just ring so true with me, someone with Daily Chronic Migraines and POTS (this thing that makes me pass out sometimes). Last year I went through the process of trying to figure out what was wrong and there were a lot of really low moments. Like Hank said, there was embarrassment and frustration and just anger at why my body was acting the way it was and why I couldn't live my life the way I saw as "normal". I still get frustrated when there's a day I can't finish my mile, frustrated at all the pills I have to take, frustrated that a day will go by and I'll have been in my pajamas while the sun is shining outside. But like Kati said, my illnesses have helped discover some of the things that really make me happy and the things that were in my life but weren't really necessary. Thanks for the awesome, inclusive video <3

  21. I've got fibromyalgia, fibro fog, loads more. It's loads to deal with, I got diagnosed when I was about 14, I am now 17 and I've got really bad anxiety because of it and started to feel really down and started isolating myself from things. I don't know what to do to help myself really, it's just hard. I am in pain 24/7 and sometimes I can't even walk, I'm suppose to be In a wheelchair but I refused it. I've got told I can't do loads of stuff such as walk the stairs, I'm only suppose to do 3 hours of college, but I do normal hours. I probably push myself too much but I'm determined, I don't want to let it stop me but sometimes it's hard and it does…

  22. I am so glad I am not the only one who feels like they have trouble connecting with others or struggle in social situations, I have cealiacs and I feel like I miss out on so much because most of todays social gatherings revolve around food and I have to skip on that,

  23. I'm 13 and I have juvenile rheumatoid arthritis and I had to take humria and it hurt so bad I was also on enbrel and methotrexate (chemo drug) still not managing and in lots of pain every day. I also have elder danlos syndrome and amps (ampliphid Pain syndrome) going thought chemo right now and infusions every month. Also taking lots of pills every day it really sucks.

  24. i have wiskott aldrich syndrome from this i have multiple nose bleeds per week easy bruising and problems with blood clots.
    very rare blood disorder as i get older it seems to worsen.

  25. I have several chronic illness arthritis, dysautonomia, and a genetic connective tissue disorder. I'm on chemo for my arthritis and loads of more medication for my other conditions. I also have PTSD, BPD, MDD which is worse right now since I'm on temporary disability due to a recent hip surgery. Also my boyfriend doesn't understand much about my illnesses and I'm at a loss of what to do. I can't sleep right now so I'm just going to keep watching these videos…

  26. amazing how most channels that i watch a few vid's of i see hank.

    is hank a youtube stalker?

  27. I am dealing with 16 medical/emotional conditions and four of them are incurable. Have been out of work for 27 months and forced to apply for disability. Finally have the court date in two weeks after fighting for over two years. This was not planned. He is lucky he has his other half supporting him, Mine is always on my case and not really there. I have a counselor and on psych meds. Since my dad died three years ago and my career has died, my world has been turned upside down. Would not want my enemy to endure the reality i face day by day.

  28. Hank! Yeay! I know what it's like to have a chronic illness no-one understands, you have to spend ages explaining it to people, and they don't believe you :/ (juvenile arthritis ugh)

  29. I have ulcerative colitis as well and alot of the things that hank said go through my mind too. one thing is that I think that if I am doing what I am doing and accomplishing things with this illness imagine what I can do without it esp. when I see other people that are helthy struggling to do them.

  30. What can make it even harder to cope with a chronic illness is when people seem to act like your not trying to get treatment or your just using the chronic illness card to get special treatment. So they start giving you all this unsolicited advice about what you can do to 'fix' your condition. And when you say you've either tried all that or that it wouldn't be effective they act like you're just not trying hard enough, it makes you feel like complete crap. I try not to take what other people think to heart. If growing up dealing with bullies taught me anything it was that, but at the same time no matter how hard you try a little bit of that tends to seep in. And it's worse when you're in a setting like a support group and you have people acting like that. It wasn't a support group for chronic illness, it was a support group for another issue but still when you're in what you consider to be a safe space with people you feel you can trust it really hurts when someone starts treating you like you're just a hypochondriac. Or going to the doctor and being treated like a med seeker. I literally had a doctor tell me that she couldn't give me anymore narcotics when I told her that I was still having issues with pain. I said absolutely NOTHING about wanting more pain medication. I merely said I was having more issues with pain. It wasn't long after that I had to change doctors because it had become very obvious that I couldn't share anything with that doctor. If it wasn't her thinking I had med seeking behavior it was the fact that I couldn't talk to her at all about medical aspects of my gender transition. She knew about it but didn't listen at all if I tried to bring it up. Until a friend of mine told me about a trans friendly doctor that she went to that actually accepted my insurance I was really depressed because it felt as if I'd never have any of my medical needs addressed. So thankfully now I have a doctor who listens and it makes a world of difference. It's just the people who think that they're 'helping' by giving unsolicited advice that can really make you feel frustrated or shameful. And it's stupid to feel the shame but it happens anyway…

  31. A friend said to me " you grieve for the loss of the expectation of normal, and then 'reset' and set a NEW normal." It has helped me cope with the depression which comes from living with chronic pain

  32. If even someone as successful and hard-working as Hank Green couldn't afford health insurance, then we have a serious problem.

  33. This is WONDERFUL. I have IBS-D, for 4 years, and it is frustrating, and depressing, and like he said, makes you feel like you have no control. but i loved what he said about accepting the "new normal" and just grieving the old normal. Something I think I still need to do. But man, I felt every single word to a T.

  34. Trying to protect my family from my problems is what makes up like 2/3 of my problems. I'm in a shitty place right now and I need help but I also don't want to make my mom cry ya feel me?

  35. Hank you say you have a ridiculous amount of privelage with being able to go into work later in the day. But don't you think it's a necessity. and you're fortunate to have people who understand and are willing to work with you.

    and i understand about not having insurance because I've been spending about 1000 or more a month for the last 5 years. And and i just got insurance a couple months ago and now only have to pay approx. 60.00 a month. this alone has changed my life.

    And talk some more about doing what you love,being creative, and using your unique experience to help others.

  36. Hank should write down everything that he puts in his mouth. Then publish it here for review. There seems to be a bizarre resistance to identifying food intolerance. I've told doctors that suffer from food intolerance and they told me "no you don't, you need a colonoscopy".

  37. Ok so, I love and really look up to Hank and John. There's something really special about watching one of them speak on a topic like this (that also happens to relate to me). This is something that is usually pretty private/intimate. I really appreciate the openness. Especially coming from someone I look up to.

  38. Whenever my illness flares up (autoimmune disease as well), I seem to always want to do the things that cause me pain/discomfort, like running, or knitting (even though I never knit and don't like doing it). I think I'm trying to prove to myself that the illness isn't impairing my life. Not sure it's totally healthy behaviour (although I don't think it's physically harmful).

  39. This was really encouraging. I've had chronic back pain since 2008, and I only realized recently that chronic pain can (shocker!) contribute to depression and frustration. And it is comforting to know that many people deal with chronic pain/illness and have productive happy lives.

  40. I would love to see you and Jenni Prokopy the chronic illness Vlogger speak on coping tools for chronic illness challenges. I am happy to suggest ideas also.

  41. I've lost my large intestine to Crohn's Disease. It was beyond repair and now I don't have it…and that part where you both discussed the grieving process really spoke to me. Letting go and accepting that you can't always be in control is something I've had to learn to do over time. My ileostomy is difficult to deal with but I don't have a choice. It's my life (at least for the foreseeable future) and I need to not beat myself up about it. Instead, I just need to accept that it's how it has to be for now and just "ride the wave". It genuinely has been a grieving process but I am in the latter stages.

  42. I have chronic illnesses and share the feeling of not wanting to be useless. I cannot handle working so what I do is make sure to set myself one productive goal and one is your goal every single day to complete. Anything besides that is a bonus so I prioritize, but by being productive and also doing something that is self care every single day I feel like I'm actually doing something!!

  43. Hank! It's Jean McCurry! Of all the places to see you again 🙂 I'm sorry you are going through this, I wish you well in the future and pray for your health.

  44. having chronic illness is even harder when you have a mental illness, or multiple. makes your quality of life nonexistent. /:
    that saying, I do love what Hank says about how you can't protect your family from your illness, it's okay to be helped, and pushing them away isn't what you need or even what they need either.

  45. Thank you! I have 5 chronic diseases, anxiety & depression. Work defines me since only 50% of IC & PFD sufferer are able to work. exactly what I needed.

  46. Sickboy podcast did at least one great episode on ulcerative colitis, and one on Crohn's too! Thanks for the info.

  47. Thank you for touching on this topic. I'm not specifically diagnosed with anything like this but suffer from similar problems and it can be so embarrassing. And not everyone realizes, it's not really about what I eat. It just happens and I can't tell when. And it's so embarrassing. 😔

  48. I am crying and laughing and for once in my life I don't feel alone with what is happening to me. Thank you. Just…just thank you.

  49. The moment he said "I don't wanna be useless" I immediately started bawling, just because that's kinda something I wish I could do, and I've spent years beating myself up to strive to do that. I don't know why I'm putting this in the comments; I just really appreciate that someone who thinks like that can be as amazing as him. Thanks Hank, you certainly arent useless. I just hope I can say the same about myself one day. Sorry for posting this. I'm probably being attention seeking. Bye

  50. I have a lot of chronic illnesses. I know from my research and seeking help for myself, that FMT is being used to treat things like UC nowadays. Maybe Hank wants to look into that. I dunno. All the best to Hank and you, Kati.

  51. Ahhhhh when I saw these two together I was so happy! Im a long time Hank and John Green fan and a recent Kati fan and I had no idea these guys even knew each other existed!!!

  52. Boy Hank, you hit the nail on the head about grieving for your old life or the new life you wish you could get, but know you never will. My husband is so incredibly tuned in to me and helps me at every turn. It hit me one day that I need to be super careful to not take advantage of him. While I cannot do much in return, I make sure I acknowledge his hard work, his intents, his help, and that his time is also being rerouted away from his personal time. It is the one thing that keeps my marrange strong (25 years!).

  53. I love Hank so much and I love you in this. I know I'm late to the video but you've got a new subscriber from this collab. I struggle with chronic illness and with mental illnessand it's such a hard balance to find.

  54. holy fuck i have been referring to the experience of having of chronic illness as like a grieving process where you have to grieve for the life you had and what you expected as well as accept your new normal and i cannot believe he said it word for word GREAT MINDS THINK ALIKE

  55. I wish I could favorite this a thousand times. 🙂 Thank you so much Katie for talking about chronic illness and for having someone as young and healthy looking as Hank. Most people have a real difficult understanding that someone who looks healthy, actually isn't and sometimes needs a lot of extra assistance.

  56. This is a great conversation. I'm also a spoonie with RA, chronic pain, Sjogren's, heart disease and stents due to RA, and a lot of other stuff. I also have mental illness, C-PTSD and a whole alphabet soup of diagnoses. Thanks so much for reaching out to help spoonies feel representation. Coping with chronic illness and chronic pain should be in and of itself a DSM-V entry. Thanks Kati, Thanks, Hank!

  57. I just finished watching this video, and I have to say that hearing Hank share his walk with UC was like hearing someone speak to my heart. I relate so hard with what he' s shared here. Thank you for this video!

  58. It's nice to see someone finally talk about chronic illnesses from a mental health perspective. To be honest they often don't get adressed for some reason. It's like because they can't be healed a big part of society seems to think like "welp, can't be helped, you just gotta deal with it" and that's all. It sucks a huge lot. I've tried finding a therapist who specializes in that and found pretty much noone. Most chronic illnesses don't even have a support group. And if there's one, well, most of the time I already know what they say and I don't think it's only me who doesn't gain anything from talking to people with the same diseases. Cause it simply isn't therapy. In these support groups you just whine and moan about it all or maybe share informations, but it doesn't adress what the illness does to your mental health, like, at all.
    Which is very sad because when you have a chronic illness, the symptoms often multiply over time and you have to constantly grieve what freedom you used to have but now have lost due the worsening of your condition. It's also extremely hard to push through your day when you have to deal with side-effects of your medication and the symptoms on top, which means you have these extra stressors in your life you constantly have to deal with. And it thins your nerves, so you're more easily annoyed/you're simply having less (emotional) energy to deal with the challenges of every day life. Then there's the isolation that often comes with the illnesses. Most people can't understand what you're going through very often, sometimes blame your for things you can not help even. And of course some people are so ill, they even are house-bound, which makes taking care of normal friendships actually impossible. And I've experienced not enough therapists having any adivce on how to deal with these and all the other emotional problems that comes out of these challenging situations. There's a huge void there and I wish it'd be more filled. Maybe it's better in other countries, idk.

  59. I wonder if eating Ketogenically could help? Keto has helped me sooooooooo much! If anyone is interested in the Ketogenic way of eating (very similar to Paleo), PLEASE check out the YouTube videos of Dr. Ken Berry, M.D.

  60. Can you please make a video on the mental aspects of illnesses like Fibromyalgia. I have Fibro, and It makes me so Sick sometimes how people treat me because of it.Thank you!- Shery, CT

  61. I am new to your channel and dont know if either of you will get this, but to both Kati and Hank… THANK YOU so much this helped me so much, I am also a musician who struggles with chronic physical illness while dealing with mental health issues relating to trauma.. etcetc just .. THANK YOU!!!! I now have new found confidence that I can openly talk with the people who love me about my illness instead of trying to carry it, feeling like a burden all the time. Thank you! 😀

  62. This has been "inspirationally vulnerable…."… Does that make sense?
    This interview/video has been highly rewarding. You are both very much appreciated. Thank you.

  63. I have neurofibromatosis (and possibly pots not diagnosed though just talked with doctors) it is hard but you are used to what you have

  64. i aspire to one day reach the same resignation or acceptance or whatever about my condition as well

  65. I just love how he talk about how he stoped feeling guilty about being granted help. It's a very hard process and I find him so inspiring. 🙂

  66. .My life and body healing insight:
    Don't get angry at your body, but learn to accept if your anger is a legitimate reaction to your life trauma.
    What took place:
    Lonely feeling. Misunderstood and judged. Lack of support and listening. Forgetting to self-care and self-forgive

    Yes, UC has knocked out my energy and my will to participate many times.
    Despite all this, sticking with my resolve to heal and care for my life as best I can – while working – has been a life lesson

  67. Oh I just stumbled upon this after a couple of John Green videos and a search for chronic pain management. Thank you Youtube's AI 😀
    8 years of Trigeminal Neuralgia has taught me a lot and yet the "grieving" idea here was very new! Thank you 💗 I'm still trying to control stuff and keep thinking I can function like a healthy person, then get frustrated when I can't. I started therapy sessions only this year (at 51!) And I'm glad I did. A lot happens when one gets a chronic disease. Depression can be one of them.
    And now I have yet another tool to ease my suffering: letting in grief. Will tell my therapist about this. He'll like it 😊

  68. I still struggle with accepting my new "normal." Dealing with an invisible illness is incredibly difficult. My chronic pain conditions don't have medications that really work. I also struggle with socializing… oftentimes people I interact with can't seem to understand why I have to cancel plans… quite frustrating.

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