30 Lessons about life with a chronic illness… [CC]

30 Lessons about life with a chronic illness… [CC]


Hello lovely people! Since I have now been on this planet for 30
years, and lived with a debilitating chronic illness for most of them, -actually, probably all of them, – I thought I should tell you the 30 key life
lessons I have learnt in my journey. Like every piece of advice on my channel,
I don’t think that these all necessarily apply purely to people with chronic illnesses. I hope you can take at least one thing from this list no matter what you’re going through
or the adversity you have overcome. Let me know in the comments below which you most
relate to most and any you think I’ve missed. 30. The internet can save you. Hello internet. My connection to the world outside my house… is just the internet! I am so thankful for you. If I lived 100 years
ago I would just have to spend my days writing copious letters to random addresses I had
found in the directory. And they would not subscribe to my letters, leave comments, click the ‘like’ button OR share it with their friends… so… just saying. [ding] 29. The internet can also destroy you. So many weird medical articles that can only make you feel worse! Don’t do that! Once you have your diagnosis, don’t spend the next decade googling it at random intervals, especially if you have memory problems or else you’ll just be reminding yourself that
it’s progressive and you’re eventually going downhill… good times(!) Also, you can
pretty much convince yourself you have anything because most symptoms overlap! 28. You will become an excellent liar and
faker. “Me? I’m fiiine… oh this? It’s just
my leg falling off. Don’t worry about the bleeding… let’s order some coffees!” Or not… a good faker I didn’t claim you become a good actor 27. There is no such thing as a schedule. You will be late, you will cancel last minute, you will feel awful some evenings, you will
feel amazing some evenings, you will sleep in, or you will get up five hours too early
and not be able to get to sleep again. – Varied(!) Keeping life chronically interesting! [news roundup] 26. You’ll find out who your real friend are. Generally the ones who don’t mind you cancelling
last minute and being late to everything. 25. It is the most expensive thing that will
ever happen to you! Oh, you thought children were expensive? At least they leave! Or you can disown them! Having a chronically ill body is like someone
dumping screaming baby triplets on you that never age and you didn’t even get to have
the fun sex part for in the first place! Having said that… 24. You can enjoy life with a chronic illness! Shocker (!) I know (!) It might not seem like it when you first get diagnosed and there are definitely days after that when you don’t have a great time. But, much like healthy
people, your ability to find the fun is based on your personality and resilience – bar any separate mental health conditions
but we’ll get on to that… A chronic illness diagnosis is not the end
of the world. You can still have fun! 23. People will annoyingly think you have
the dream lifestyle. “I would love to stay home in bed all day” “Oh my God, Susan, shut your face!” 22. If someone says “you don’t look sick”,
you will want to punch them. Even if you’re a pacifist. Sometimes when
people say “wow, you look really bad” I almost cry with relief! Thank you, thank
you, thank you for seeing me on the inside! I will be offended if you don’t mention
how nice my hair is today though… 21. Mindfulness does not reduce pain. Jog on. 20. Do not compare yourself to anyone. Ever. Even other ill people. We all have different experiences and presentations
of symptoms. We all start from a different place We all encounter different obstacles. You’ve got this, you’re doing great, you’re still moving forwards, don’t look to those
on the paths beside yours or you’ll lose your way. 19. Other people WILL compare you. Sometimes to yourself. “You could do that yesterday.” “Well I can’t today, Brian! Deal with it!” More often to other people with the same or
similar conditions who are either doing a lot better or a lot worse. There is a high
level of guilt embedded in this but no one knows why and it’s not always intentional. 18. Plants and flowers will save your sanity. Bring the outdoors indoors, get a little feel for what you’re missing and you won’t
be missing it too much. It’s also great to have a hobby… like flower arranging. 17. Have hobbies. REASONABLE hobbies. When considering a new hobby, don’t just think of the energy it takes to do the thing itself but also the set up and clean down time. Start small and expand from there. 16. Resting is a lie. Resting beforehand may increase the odds that you’ll be less sick than usual on the day
of an event… but it’s no guarantee! The misconception can lead to friendship-threatening
misunderstandings if you’re too tired to make an event and the host feels it’s because
you didn’t rest enough beforehand. Naps are also a lie- I always wake up from a nap
feeling worse! 15. Taking care of your mental health is vital!
Setting aside any unrelated mental health issues you may have, physical and health problems
can have a huge impact on your mental wellbeing. Conversely, poor mental health can then impact
on your physical state. Even able-bodied people feel the physical impact of stress: your heart
races, your shoulders tense, you get a headache. In a body that’s already under pressure,
those same responses can be very harmful! Keeping mental stress to a minimum is vital
when you’re chronically ill and sharing your feelings is a big part of that. I’d
encourage you to keep a diary, talk to friends, even just vent your feelings though a good
chat with your dog. [beat] I’m not kidding, Walter is a great listener. If, however, you feel you might need a professional
to share their expertise or just to talk to, I would definitely advise you to consider
counseling. I’ve talked about the online counseling
service BetterHelp before and I honestly would recommend them so I’ve asked them to partner
with me on this video. I remember trying to go to therapy when I
first got really ill, to help me deal with the stages of grieving you invariably go through
when you’re first diagnosed, and it… just… was NOT practical. I was so ill that getting
from my bed to the bathroom, which was less than five meters away, was a big deal. Getting
dressed, getting downstairs and then having to sit upright in the car for half an hour
to get there was just too much and often I’d be unconscious by the time we got there or
I’d sit on the steps beside our front door and just cry because I was so exhausted. I wish I had been able to use the internet
to access such a great resource! With BetterHelp all you have to do is fill
in a short questionnaire to be matched with one of their 3,000 licensed therapists. Then
you can message your councillor whenever you want through their website or mobile app!
If writing isn’t your thing they also offer telephone or video chatting and cover a wide
range of languages- including American Sign Language! You pay monthly and it covers all
of your messages, chat, phone and video sessions. I know there were some misconceptions about
BetterHelp flying around the internet last year but they’ve given me some really clear
answers to the questions I had and I’ll copy/paste them into the description for you. Whatever route you take, even if it’s just
talking to your cat, internalising isn’t good for your mental health- let those feelings
flow…! 14. You have sooo much time on your hands…
Oh, the hours and hours and hours you spend in bed… 13. You also have no time.
Because those long hours aren’t healthy hours, you can’t actually do anything with
them. My mother once told me: “Your father is
very disappointed that you haven’t spent all this time in bed reading more classic
books” and I honestly have never been so devastated. 12. Being constantly ill can be painfully
monotonous After ‘giddy’ and ‘enthused’ my third
most common feeling is ‘I’m ready for something new! Can we be done with this illness
thing now? It’s very boring’ Generally my day-to-day symptoms are just…
day-to-day… they don’t really change. I’m ill. I’m in pain. I’m tired. At this point it’s kind of exciting when
I have an injury- just because it’s different! *11. You’ll get cabin fever: originally
meaning you get stuck in a log cabin for an incredibly long winter. Chronic illness meaning:
“oh my god, I hate this house, get me out of here!!!!!!!!!!”
I recommend window shopping for new houses online. Saves me from chewing my own arm off. 10. You need to surround yourself with only
positive thoughts and comments. Sometimes people in my life like to give me
a ‘dose of reality’ when they think I’m being too optimistic. To which I ask: – are you a sociopath? Why do that? Do you
think you’re bringing something new to my life? Having a chronic illness means you’re starting
at a negative; being positive and happy can only be a good thing. I’m not stupid, – I’m cognitively impaired! [joke noise] Ahem. I’m not stupid, I know that it is
more likely things will not go in my favour but don’t you think that positivity is keeping
me going? If you take my happy future away, why do you
expect me to keep going…? [long stare] Well that got dark! *9. You will care so much less about the little
things. It’s actually quite freeing. “Oh that
shelf is slightly dirty? Whatevs, I’ve seen the light and come back!” 8. You will care so much about tiny things.
– What? It’s a life of contradictions. If my episode of Poirot starts five minutes
later than normal today I will flip out! Do they not realise this is literally my entire
life?! It’s the highlight of my day! Actually, now it’s my wife coming home from
work, but I still freak out if that’s later than normal. 7. Other people diagnose you randomly!
Strangely enough, I am more inclined to trust the doctor who has studied the human body
for 30 years than a distant cousin of my friend’s mother’s next-door-neighbour’s best friend.
I’ve probably had every test known to man at this point and I’ve definitely not got
whatever freaky metallic frog virus you just mentioned! *6. Other people will also try to fix you
randomly! “Auntie May took essential oils and it grew
her whole leg back!” “Not the same thing, Janet!” 5. Doctor’s appointments take ALL. DAY.
“How long should I expect my appointment to be?” “15 minutes to four hours”,
“How long should I expect the wait to be?” “Twenty minutes to 10 hours”, “How much
energy should I expect to use?” “ALL OF IT” *4. You’ll get very good at faking you care
“Oh you stubbed your toe? Please take twenty minutes to tell me about it while I hold my
side, smile, nod and try to pop my rib back in!” – yeah, they dislocate. It’s a thing Leading on from that… 3. You spend a lot of time managing other
people’s emotions Whenever you tell someone close to you about
being ill or your diagnosis they will feel a range of emotions. Sometimes they will look
to you to comfort them about these emotions. Occasionally it takes more energy to look
after how those people feel about you being ill than it does to actually be ill. Eventually
you just stop telling people about your illness. 2. Body positivity means being positive about
the body you are in right now. Ignore negative things other people say or stop them saying
it. “You’re too thin” or “you’re too fat” are not comments that have anything
to do with your actual health- that is a person’s guttural reaction to visual stimulus. You
are not too anything, you are today’s you! And you are allowed to love the you of today
even if you want tomorrow’s you to be different. 1. Kindness is the most important lesson.
Forgive yourself. I’m not talking about other people here,
we’re done with managing their emotions. I want you to know that being kind to yourself
and forgiving to your body is the best possible thing you can take away from this video, this
channel… me. Having a body that doesn’t work the ‘normal’
way can feel like a fight- like you’re constantly battling on to NOT be ill, to NOT ‘give
in’ to your diagnosis, or if you have to then you’re going to be one of those amazing
paralympians because they’re the ‘good ones’! Sometimes surrendering and giving in is the
bravest thing you can do. Admitting your limitations and finding a way
to work within them is powerful. Being kind to yourself is a subversive act when your
very existence is a round peg trying to fit in a square hole. If you’ve just been diagnosed with a chronic
illness: you will grieve but you still have great potential. Not everything has to turn out as perfectly
as you imagined it. And not everything has to go down in flames. There is a world that
lives in the middle of all of that. And I’m here to welcome you! Subscribe if you haven’t already and I’ll
see you in my next video! [kiss]


100 thoughts on “30 Lessons about life with a chronic illness… [CC]

  1. Some facts about BetterHelp:

    All the Counselors on BetterHelp, with no exceptions, are licensed, trained, experienced, and
    accredited psychologists (PhD / PsyD), marriage and family therapists (LMFT), clinical social workers
    (LCSW / LMSW), or licensed professional counselors (LPC).

    BetterHelp has a very lenient refund policy which provides 100% money-back to any
    member who was not satisfied for any reason.

    Why did BetterHelp get the negative attention on YouTube?
    In late September BetterHelp ramped up its influencer marketing initiatives towards World
    Mental Health Day (10/10). Within a few weeks, it sponsored many high-profile influencers. BetterHelp became a “trending” topic on YouTube and it incentivised many creators to follow up on the content to grab views. Several mainstream media outlets picked interest at the topic following the controversy at YouTube but after doing their own fact-checking they all came to the conclusion there is no merit to any of the
    allegations and they all dropped the story.

    More reading:
    https://medium.com/@alonmatas/when-betterhelp-found-itself-in-a-youtube-controversy-3fd472229a4e
    https://medium.com/@alonmatas/making-betterhelp-better-with-better-terms-and-conditions-8f542e82e735

  2. It's 4:15am here in the frozen wastes of Yorkshire (I joke of course, but after 16yrs living in lovely Bristol, it now feels like that..) and thanks to MS muscle spasms, I find myself pooped yet sleep evades me.
    BUT after watching/listening to Jessica on bbc click, I have just encountered THE truest (sp? word even??), most entertaining 11m52s I've had in a long time.
    I'm going to share this to 2 huge group pages that I belong to on Fb – I'm certain that many of my fellow MSers will agree and those who also use yt will subscribe.
    Excellent content, Jessica – well done!

  3. I simply adore this video. Loving todays body even if you want tomorrows body to be different spoke to me. Living with a disguised chronic illness at a "young" age has always been difficult. No longer will we be managing others emotions or wallowing in selfpitty. Thank you for your message. Much love! 😘

  4. I’ve had crohn's and colitis for about 10 years now, and while I relate to pretty much everything you’ve mentioned, nothing hit harder than the “You don’t look sick” part.

    Oh my god I wanted to punch my middle school principle for that remark.
    Dude, my insides are ON FIRE, you can’t see the inflammation from the outside.

  5. The part about stress and chronic illness is so so important! As well as ME/CFS, I suffer from NEAD (Non Epileptic Attack Disorder) meaning emotional or physical stress can cause an immediate fit. Whenever I try to explain that I need to avoid stress I get lectured about how it's a "part of life" and I just need to "toughen up". Like, obviously it's impossible to avoid all stress but even managing to remove small stressors from your life as a chronically ill person can have such positive effects, so if I can do so then I will. There's this bizarre idea nowadays that the more stress and pressure someone is under, the stronger they are and more respect they deserve, and it's illogical. Even as a healthy person it's pointless subjecting yourself to unnecessary stress, but, as Jessica says, in a body that's already under such strain, it can be extremely harmful.

  6. "You are allowed to love the you of today even if you want tomorrow's you to be different." Damn, woman. Wow.

  7. This one put a tear in my eye, thank you, I needed the reminders, been a bit rough last couple of days. 💐🙊🙉🙈☕️

  8. "You are allowed to love today's you even if you want tomorrow's you to be different." This is amazing. Thank you!

  9. "You are allowed to love the you of today even if you want tomorrow's you to be different"
    I love this so much, i wish i could truly believe it. Thank you Jessica ❤️

  10. My dad has a chronic illness causing him great difficulty when it comes to breathing and I can see him totally understanding many of these points.

  11. The you don’t look sick and you were just able to do that things are infuriating. Yes, dear, when I wasn’t in the middle of a debilitating breathing episode I was peachy keen, and now I’m not. 😑

  12. I absolutely love the straight forward honest way on how you talk about this topic! I myself have Crohn’s diseases and recognise so much in what you share. Love watching your videos! Thank you for sharing!!

  13. As someone who suffers from chronic illnesses and has been suffering greatly recently, I really needed this video. Thank you ♥

  14. The cool toned eyeshadow look you found for your vintage pale complexion is impressive. Did you use the sultry palette by chance?

  15. I needed this! I have mixed connective I've tissue disease and I feel like I have days where it's bad and I try to just…push through it? People ask what's wrong and I just say "my body hurts" and they're like oh yeah, my back's been hurting. And I'm like. No. You don't know. You don't know that I've been awake for seven straight days and that every piece of tissue in my body is swollen and throbbing. That means my eye balls, my sinus, my ears, my feet my hands, my knuckles, all feel like a deep tender bruise. But please tell me about your back pain you have from a 30 year old football injury that mostly likely is just a segue to talking about football.

  16. Holy crap you're an redhead Carmen Miranda.

    No wonder why I thought you were so vintage and familiar lol. BTW, it may be now nws to you, but you're absolutely gorgeous.

  17. I love your style and you're super pleasant to watch! I don't even much care what the topic of a video is, I'll just watch it to look at you and listen to your beautiful voice!
    P.S. Your hair is really nice today
    P.P.S. submeplskthx

  18. This brought me much comfort. I’ve been dealing with chronic health issues for over a year and it has been insanely challenging in so many ways. Thank you for this.

  19. Thank you thank you thank you ❤️❤️❤️❤️ I’m actually crying. Number 1 is exactly what I needed to hear today

  20. Thank you so much for your videos! My husband has a chronic illness, and your videos help me be better wife for him.

  21. I haven't cried so much since my diagnosis as I did listening to this especially number 1. Thank you. I'm glad I found this channel 💕💕

  22. "Dream lifestyle" I CAN RELATE! I have to miss school for POTS and my classmates are like " Lucky you just get to miss all the work! " no I'm not lucky I miss all the fun!

  23. I relate so much with the rib comment. I always try to suck it up while people tell me how their muscles are sore while I hold myself together with ductape and willpower.

  24. I relate to 2-16, 20-27, and 29 & 30. I need to work on the others…
    But actually, I would just really like to know where you got your top/dress? 😬❤️

  25. I am SO glad I added your "let's talk about vaccinations" video to my 'watch later' list yesterday.
    This is only the second of your videos that I've watched, but already I want to say OMG THANK YOU for what you are making, and putting out into the weird world we all live in right now. I am so excited to watch more of your stuff :B especially because all of your little asides are freaking wonderfuuuuul <3

  26. Thank you for this. Having been diagnosed with fibromyalgia and now potentially with another central nervous system disorder (waiting for more neurology assessments), I really really needed to see this. ❤️

  27. Ive had chronic fatigue syndrome for just over half my life now, this video really spoke to me! I love your videos and your positive attitude 🙂

  28. I relate to this video so much. I'm in my first year of uni and more often than not, when I end up in the ER 90% of my time is spent comforting whoever is with me so I can just get on with dealing with the Doctor or trying not to die.

  29. Oh my, pretending to care about other people's ailments is the bain of my life 😂 most of the time it's okay but when I'm sat there with a flare-up, mask on and struggling to muster a sentence without immense pain and my brothers there snivelling about a cold he's coming down with. I always feel like a dick but it's just so irritating

  30. Mindfulness doesn't reduce pain, in fact if you're so used to being in pain that you don't pay attention to anything but the worst of it paying attention to your body sensations tends to make everything hurt more actually

  31. Can we get all of that body positivity quote on a t-shirt? Also everything you said for 1 on a separate shirt?

  32. I was diagnosed as a child but as I've grown up its become apparent that there's something else going on, as I've always had some level of pain and haven't always had full abilities I've got grief for who I used to be but its not as big as who I could've been, in reality I never really used to think about it but as I got into my later teens I lost a lot of the already quite limited abilities I used to have

  33. Thank you for speaking exactly what’s been on my mind, but with much better humor. You’re my hero.

  34. "Well I can't today Brian! Deal with it!"
    Thank you for sharing this! It's so nice feeling understood!

  35. 6 – Other people will also try to fix you…

    I could not stop laughing… because a friend from Malaysia told me that some random person went up to her and told her that a person can grow a limb by sticking sanitary pads around it… haha… not to make fun… but my friend who is a scientist trained in Melbourne, was like “erm… what?”

    Btw, hello from Singapore!

  36. 10:30 hit me so much harder than i'd like to admit. i'll be honest, i'm fortunate enough not to have a condition that causes pain, or fatigue, or anything that generally puts a huge strain on my daily life. but it affects me enough to have a knock-on affect on a lot of things i do. certain random activities (like going to the beach, for example) are completely out of the question for me BECAUSE of my condition. but there's something about the reassurance that people are just reacting to what they see that's strangely… hopeful, in my eyes? it's a really lovely thought. 🙂

  37. “You could do that yesterday” “Well I can’t today so deal with it.” Quite relatable and so difficult to explain or get understanding for.

  38. Thank you for this! I have two chronic pain illnesses and have being trying to get my mind around it, your suggestions will help greatly. Thank you again.

  39. 'You don't look sick' – what they say
    'It's unbelievable how pretty you are despite having to deal with all of this' – What they mean

  40. "Stop reading things on your illness, it is taking over your life"um… I keep getting diagnosed with new things, they keep changing the research on the things that I've already been diagnosed with… How do i not keep researching these things!?! I'm collecting conditions like freaking Pokemon and it's just impossible to keep up with all the information out there and family just doesn't get it. Anyone else have that issue??

  41. Something I just said today to my therapist:
    "I can't magic away my experience. I can't deny the past, or forget it. All the hospitalizations, all the needles, all the pain. That's trauma, and I want to be able to feel it and have my Dad deny that it happened. I literally wrote in that essay last year that I am more afraid when I am well. I'm so used to waiting for the other shoe to drop like it always did. I know I'm pretty well off now but I know it will come back." (I have Crohn's.) Let yourself experience the pain. Many people don't like pain and do what they can to always avoid it but sometimes you have to sit in the pain or use a healthy outlet like therapy or writing it down or talking to friends and family. Do your best to not drink or do drugs (unless prescribed, and even with that, follow their instructions correctly. They know what they're doing, and communicate if you want to make changes. Communicate, communicate, communicate). Also, being chronically ill and mentally ill and in general, can definitely be contradictions. I call myself a human pincushion and a walking hypocrisy.

  42. Thanks so much for this video, it is super helpful! I will probably forget and come back to this video multiple times haha

  43. Thank you for this video. As someone living with chronic illnesses, it makes me feel like a lot less alone in my experiences.

  44. Thank you so much for your fiercely positive and motivating videos. I'm currently in the process of getting diagnosed with hypermobility (it's not particularly bad for me, but it's still scary and unknown) and your videos have really helped me work through everything. Thank you for being a friend who understands 🙂

  45. Also with the internet if you get a really vague answer from a doctor, and thats your diagnosis, my cardiologist said I have disautonomia, but that is just a category of disorders , so I was able to learn from the internet I am 98% sure it’s neurocardiogenic syncope, and that yes I do need to still be careful before I can in fact pass out, even if I haven’t yet. Just make sure to not obsess.🤗

  46. I have a chronic "mystery" illness that I am working to get diagnosed and I am so grateful to have found your channel. I related to everything you say and I aspire to have your aesthetic. You appear so well put together!

  47. I’ve taken up knitting lately. Sometimes I’m too tired to sit up and knit, but for the most part I can start and stop with no cleaning (unlike painting) and I can do it all while sitting. Plus I have a finished product at the end of the day (hypothetical “day”) to be proud of or, even better, to give to a loved one.

  48. I have trigeminal neuralgia, and can relate to every single thing you say. You are wonderful and have a beautiful soul. Thank you for this. 😙💖

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