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]