How to talk about Chronic Illness | invisible i


Inspirational T-Shirt : check! Notes : check! Sassiness : always! Hey everyone, it’s Katy and welcome back to
my channel. So today, I thought I would, sort of, like a general video just talking about
ways that we can start talking about Chronic Illness and just giving you a couple of my
tips. I have previously shared these tips with you guys – I did this video on my previous
channel. I spoke about it in terms of Tourette’s I think – I think it was, sort of, a video
talking about how to talk about Tourette’s. But I have realised that these tips can be
applied to many different illnesses so I thought I would just about then again in this video
but just make it a little less specific. So tip number 1 is following the amazing advice
of Dr Phil and that is to teach others how to treat you. When we’re talking about this
whole conversation of Chronic Illness and starting up a conversation you really want
to approach that conversation in the same way that you would want someone else to approach
that conversation with you. So if you go into that conversation feeling shy and awkward
and uncomfortable and like you really don’t want to be there, other people are going to
take that same approach with you when they talk about things or if they need to discuss
Chronic Illness with you further down the line – like if you’re in work and you’re discussing
it with your boss – f they need to then talk about it, they’re going to come at it in the
same way that you approached it. So they’re going to talk about in an uncomfortable, shy,
awkward kind of way. If you don’t want that and you want people to be open and honest
and accessible, you need to go into that initial conversation being open, honest and accessible.
Teach others how to treat you and teach others how to approach your own Chronic Illness. Tip number 2 kind of links closely to tip
number 1 which is to tailor the conversation to the people you are having it with. This
is something that is sort of overlooked and can be quite difficult to do really. But just
think, you wouldn’t really explain Chronic Illness to a child in the same way that you
would explain it to and adult. This also applies to people who are in your life. So even if
you have 2 adults in your life – I did 4, I don’t know why! But if you have 2 adults
in your life, maybe your boss and your friend and you are wanting to talk about Chronic
Illness with them, you;re going to talk to your friend in a different way than you’re
going to talk to your boss. The way that you talk about your Chronic Illness has implications
and can potentially have consequences in the future. So for example, with a boss you should
go into that conversation and tailor it in a way that is quite formal and as if you are
in a work environment because it’s your boss! So you shouldn’t really go into that being
quite light-hearted and laughing off your Chronic Illness because if you’re going to
need time off down the line or if something comes up that you can’t do because of your
Chronic Illness, your boss probably won’t take you seriously because you laughed it
off at the beginning. So with your boss or someone who is of ‘higher status’ than you
or someone who you need to have take your Chronic Illness seriously, you need to be
more formal, more structured and much more serious in your approach. So tailor it to
the types of people not only age but also in relationship. Next tip is to set boundaries beforehand.
You do not need to go in there and verbal diarrhoea everything out about your Chronic
Illness. They should respect you – whoever you are talking to should respect you – regardless
of how much information you give them. Even if you tell them that you’ve just got a Chronic
Illness, that should be enough for them to respect and understand that you have limitations.
So think about how much information you want to give beforehand. You can plan it out, think
about what is enough and what is too much. I think I should’ve done this way more back
in College because I didn’t really set myself boundaries and that is where everyone knew
everything about me and I felt hugely uncomfortable towards the end of my College experience because
everyone knew everything! I didn’t particularly like that so I should’ve set boundaries to
myself and now I know those people out there do not need to know everything in order to
respect and understand you. So set boundaries with what you are comfortable with and then
hopefully that will make you a bit more comfortable in the conversation. So my fourth tip is to have this conversation
as early as possible and that just means as early as possible in the relationship. So
if you have just met someone who you’re probably going to be spending a lot of time with or
you’re in a relationship where your Chronic Illness may become a bit of a hindrance, you
need to try and talk about it as quickly in the relationship as possible. You don’t want
things to continue ticking over, you making excuses for things, the other person getting
frustrated, annoyed or confused. This is where the animosity starts coming in and the rumours
and you don’t want any of that! You want to try and avoid it. It can give you a bit of
a kick because you should be able to take responsibility of your Chronic Illness – don’t
try and hide it or sweep it under the rug. It’ part of you so take responsibility for
that part and talk about it. Don’t let the conversation rule you. Sometimes you can sweep
it under the rug for as long as possible but eventually you’re going to have to talk about
it because everyone else is noticing something or somebody has said something so you’re going
to have to talk about it. Don’t get to that point where the power has been taken out of
your hands. Go in there from the start with the power and the responsibility and be like’
you know what, I am taking responsibility for this, I’ve got the power over this situation
nobody else does!’. Don’t let the power be given to someone else or have this last resort
where you’re like ‘Oh I’m going to have to talk about it now because everyone else is
discussing it.’ Try and be as early as possible in order to take responsibility for your own
medical health. And my last tip is to keep the conversation
going. This is something that I always recommended on both of channels is that you’ve got to
continue this conversation. Chronic Illness, Invisible Illness, Mental Health, Neurological
Health, whatever kind of health condition you’re talking about, this cannot be discussed
in one day and then everything resolved and then it’s fine. This is going to be a continuing
conversation so be open to that and continue that conversation. Don’t feel like it’s just
a one-off thing and then you can never talk about it again. Continue to bring it up and
almost normalise it for others because if you’re going into maybe a work situation,
if you talk about things in a more ‘normal’ way, people are going to start to think about
your Chronic Illness as being ‘normal’ and just a side of you and they’ll accept it a
little bit more. So continue the conversation, get all the information out there, especially
if you have a Chronic Illness that changes like Fibro, like Tourette’s, maybe even Anxiety.
These things change over time and your needs change so you need to continue the conversation
and keep the information flowing because if you have something that changes with your
health you need to be able to talk about that openly and if you’ve just had the one conversation
and no one has spoken about it since, you can be back at square one and it can be a
little bit frustrating. So keep the conversation going and just know that this has to be a
ongoing thing. So let me know your tips and tricks for approaching
Chronic Illness in the comments below. I want to know all about your experiences – whether
you’ve had a good one or a bad one, Lord knows I’ve had both! So let me know your experiences
in the comments below. Let me know if this video has helped you by giving it a thumbs
up. I hope you’ve had a really, really good day and I will see you soon – bye guys!

11 thoughts on “How to talk about Chronic Illness | invisible i

  • My problem has always been, and still is in some sense. Talking to an authority person, they never seem to understand. So in the end i get frustrated after the meeting or the conversation because i always had to walk out feeling like they never understood. Iv often also had people like that, chalk it down to laziness and not "as bad" as iv explained it. And its immensely frustrating. As much as i wish i could work, its also a relief that i don't have to deal with that anymore. People especially in the work environments need to get more educated and need to see people for who they are and accept the limitations that may or may not be there. Of course not every place and every person is like that. But when you meet enough people and attitudes like that it breaks you down too and so for me its hard to talk about to some people face to face still to this day.

  • This is an extremely complex topic, “who to tell what & when”. My “Autism Alert Card” has provided me with “time to breathe and think” when certain “authorities” are demanding a “speed of thought” which I am unable to muster, but it’s different for everyone. I wrote an article on “managing anxiety” for my psychologists website if it’s okay to post links?
    http://axia-asd.co.uk/managing-anxiety-the-autism-alert-card/

    I have to keep reminding my Self that despite my age, there is good reason I am legally considered a “vulnerable adult”. There is also much to be said for the “Power of NO” (not the “Power of Now” which may be of equal value). Apologies though, I can’t accept “Dr Phil” as any citation of credibility! </chuckle>

  • Hi I love your videos so much! You are amazing.
    Just wondering what is the song/music that you have at the beginning of your videos? x

  • Heh, oh I've certainly done that mistake of telling everyone about every single detail of the illness and then get uncomfortable when everyone knows everything. Now I've settled for a very straight forward I have X diagnosis, it's second name is Y. And if they got questions I basically recite Wikipedia. Cold facts.

  • Hi, I noticed that you're autistic and you have fibro- I was wondering if you'd ever heard of ehlers danlos syndrome? I have EDS, and I'm autistic and there seems to be a connection between the two. EDS is often misdiagnosed as fibro! Especially in women. Also, a lot of EDSers have anxiety, and fatigue on top of the chronic pain and hyper mobility

  • Hi, I noticed that you're autistic and you have fibro- I was wondering if you'd ever heard of ehlers danlos syndrome? I have EDS, and I'm autistic and there seems to be a connection between the two. EDS is often misdiagnosed as fibro! Especially in women. Also, a lot of EDSers have anxiety, and fatigue too. Obviously there's many other symptoms of EDS; hypermobility, poor proprioception, easy bruising, joint problems such as dislocations, migraines and IBS, but it's worth considering.

  • I have learned these lessons the hard way after having to eventually leave my job as a riding instructor because I constantly gave excuses for why I couldn't come/was late for work because I wasn't completely open about my depression & anxiety issues, even though I really enjoyed teaching once I was there. It just stressed me out real bad… Now I am way more open about it with my trainer, etc. and she understands that sometimes my mind (and body, I've got fibromyalgia too) can't comprehend riding that day and we work it out one day at a time… It's sad but it's how I manage… So much for my Olympic dreams tho… 🙁

  • I'm lucky in that my manager at work also suffers from a chronic illness systemic lupus so I have similar symptoms with my arthritis and I also take similar medication, so we often have good intimate chats about things relating to that. Sometimes I just email her if I don't feel a meeting is necessary and she holds onto those emails for records.

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