Hello lovely people!
I first started talking about chronic illness and disability on YouTube five years ago-
shocking, I realise, hi to those of you who’ve been here since then- and I’m often asked
for tips on the path to getting a diagnosis.
So I thought today I’d put them all in one place in a handy video that you can come back
to as you go through your journey or perhaps share with friends who are just starting out
on theirs.
So welcome to: Jessica’s Chronic Illness Diagnosis Tips!
If you’re new to the channel: hi, lovely to have you. Subscribe to join me as I talk
about disability, chronic illness, LGBTQ+, forgotten history and now mum-to-be stuff!
We talk about big issues but always with a smile and optimism.
- Also we make fun of bigoted people who’ve been dead for hundreds of years! That’s
always fun!
1. A DIAGNOSIS IS NOT THE BE ALL AND END ALL
I’ve been living with a chronic illness for about a decade and a half… officially.
Although I can’t exactly remember being ‘healthy’ before then!
I definitely don’t have the classic tale of ‘I was a gymnast and spent every weekend
rollerblading with my friends then suddenly I became ill and couldn’t get out of bed!’
My story was more of the:
- you want me to run over there with the other five-year-olds? Really? With these knees?
And they find this fun? Weirdos!
So yes, I’ve experienced living for quite some time with symptoms and feeling rubbish
but not having a piece of paper given to me by a doctor that I can wave around to show
WHY I feel as bad as I do.
It’s worth remembering though that whilst a diagnosis often validates your lived experience
for other people- and goodness does it make life that little bit easier when it comes
to financial welfare and accessing services that are just impossible to benefit from without
that rubber stamp in your notes- it DOESN’T necessarily impact on your treatment or even
your eventual prognosis.
Having said that, a major reason I fought to have my own connective tissue disorder
looked at again and re-diagnosed to a similar-but-different connective tissue disorder was because I worried
that I’d be missing out on more effective treatments or that I’d be doing things to
‘help’ my disorder that were either pointless or actively harmful in the long run.
Getting a diagnosis can also be confusing because as my story shows, a lot of people
with a chronic illness will receive different and sometimes conflicting diagnosis from different
doctors.
- and the cherry on top? Getting a confirmed diagnosis is too expensive for many people
and we should always keep in mind that having that word on your file doesn’t make your
experiences any more valid than those people who are going through exactly the same thing
but cannot afford the official process.
2. PROTECT YOURSELF FROM MEDICAL GASLIGHTING
Medical gaslighting is being told you’re absolutely, perfectly fine when you’re very
aware something is wrong with you. It’s the ‘this test says you’re fine’ said
in the ‘so you’re healthy’ voice, when all you want to scream is ‘so find the test
that proves I’m not!’
It’s when they say it’s all in your head… but also don’t think that hearing that repeatedly
will have an impact on your mental health. It’s making you doubt yourself over and
over again because you didn’t go to medical school and you don’t have a degree in…
this.
- well, they don’t either.
You might not have sat through classes in diagnostics but you’ve sat with your body
for however long it’s been on this earth. You know what feels right and what doesn’t.
Remember, they might be an expert in your condition, but they’re not an expert in
YOU.
We’re all different. Our flesh and bones are all different. You will reach a point
where you feel like you physically cannot take being dismissed anymore, like the people
around you just don’t understand your pain…
And they don’t-
But that doesn’t mean they don’t care.
It’s easy to lose faith in other people when you tell them that you struggle to get
out of bed in the morning and they say “have you tried the couch to 5k challenge”
[beat]
- you have an integral misunderstanding about the formation of my being.
They genuinely don’t mean harm though, so try to hold in your heart that they don’t-
- unless they do, in which case they’re just toxic people and you’re better off
without them anyway, regardless of the ties that supposedly bind you!
But also hold yourself mentally as a special, beloved and cherished little being that you
need to take care of. It can be incredibly draining when you’re being dismissed by
medical experts and thus denied access to the daily living services or assistance that
would improve your life.
For instance: it seems small but my god, my disabled parking pass makes a HUGE difference
to my life- it allows me to actually leave the house regularly-
- ignoring Covid
Because I can park near to where I actually need to go and I don’t need to waste excess
energy walking to my destination and I can relax in knowing that should something happen
to me whilst out and about (which is pretty often) I can easily get back
to the car and to safety.
But I couldn’t get that parking pass without my official diagnosis.
And yet, I spent such a long time being dismissed that I also doubt my own diagnosis sometimes.
When I was called in for my vaccine I had a moment of “oh my god, that means I’m
actually an ill person”.
- [‘what, Jessica?!’ look]
3. KEEP GOOD RECORDS
Journaling your symptoms- keeping track of how they fluctuate or increase whilst on the
path to a diagnosis- helps validate your symptoms, not just to your doctor or friends and family
but also to yourself. It’s also really, really useful to show the patterns and occurrences
of your symptoms.
For example, your journal might show you a trigger that sets off your migraines that
you wouldn’t have otherwise noticed.
It’s also really helpful and healthy for you emotionally to work through your feelings
on paper (or electronic paper)
Your notes can be really simple and handwritten or they can be incredibly complex calligraphy
that you’ve laminated or framed or… maybe you’re just using Google docs? I’m a huge
fan of Google Drive for keeping your hospital letters organised as well. I think one thing
that might be really helpful if you tend to have difficulty with lots of bits of paper
and keeping track of things-
- I personally don’t think in a linear fashion so my memories aren’t linear either. I can’t
recall: took letter from postman, opened letter, read letter, took letter into office, put
letter into filing cabinet. Instead my memories are: had red nail varnish when I held the
letter, postman has a new jacket, held a similar letter once, I own a filing cabinet.
Doesn’t actually tell me where the letter is or if I actually put it into the filing
cabinet. But if you create a folder on your google drive then you can make google docs
to take down notes, keep a list of your current medications AND add photos of your important
documents so they’re in one tidy place.
All of this can help you explain to your doctor what you’ve been experiencing recently,
especially if you struggle to put things into words in the moment or like me reply to “how
have you been recently?” with:
- “fine!”
Even though you’re sat there in excruciating pain without working limbs.
- “everything is fine!”
By the way, this probably isn’t news to you but... one thing that’s really important
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- unless of course you are a spy!
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- I realise that’s neither a website or a service but…
DID YOU KNOW GREY’S ANATOMY IS BACK?!?!
So during the first lockdown I became, uh… more than a little obsessed with Grey’s
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- WHICH IS JUST RUDE.
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4. INVOLVE AN ADVOCATE
Whether it’s a parent, a sibling, a friend or a random family member that you’re not
entirely sure how you’re related to but you vaguely share some blood and more importantly
actually like them, it’s a great idea to involve someone else in your path to a diagnosis.
Sadly, often doctors will find it easier to believe other people’s experiences of your
symptoms than your own
- especially if the other person has a professional sounding career that isn’t ‘YouTuber’,
just putting that out there…
Also if that other person happens to be male or white...
The other person can also help you stay on track and make sure your pressing questions
are answered as well as advocating for only diagnostically useful tests to be carried
out.
I have a rare nerve disorder and a not unheard of connective tissue disorder. Whenever I’m
being seen by doctors for anything relating to my nerves I end up being put through test
after test after test and I never question it because… I don’t really question things.
But my lovely wife Claudia has a medical family and when she comes with me to the doctor she
asks before every test:
“what’s the point of this?
What will it show?
How will it benefit Jessica?
Are you just intrigued by how weirdly her body reacts to things?”
And if it’s just for their research rather than specifically to help me she says no.
Which doesn’t even enter my mind!
- you’re allowed to say no, Jessica.
And… you’re never too old to need someone to hold your hand. Or have someone to discuss
things with afterwards who was actually there. It takes some of the pressure off you to know
you’re not going through things alone.
Additionally, write questions down before doctors appointments and take them with you.
It helps if you forget anything (and if you get too emotional)
5. ASK FOR MEDICATION
This advice is very location specific, I realise. I’ve had feedback from viewers in countries
like America that for them the way their medical system is set up and their government’s
very prominent ‘war on drugs’ means asking for medication is seen as ‘drug seeking’
and can hinder their search for a diagnosis in the long term so do consider that but I
would suggest not so scared that you’re hurting yourself by not treating a problem.
But I can only give you my own experience and perspective as a british person obviously.
But please do all share your own experiences in the comments down below cause many experiences
are location specific and we can learn from each other and I'm sure there will be someone
in the comments with whom you quite closely associate.
The process of getting a diagnosis can be a long and winding road that can take any
length of time, all while you’re dealing with the symptoms in the here and now. That
can understandably be a very frustrating and painful experience.
Fortunately, doctors usually work on a symptom based process, where they will try and identify
and treat the symptoms first while looking for the true root of the issue (ie. the diagnosis).
If you’re clear in your reasoning along the way with your doctor you’ll be able
to ask for some medication to relieve the symptoms whilst you work to actually get a
diagnosis.
In my experience it was actually far easier to get pretty heavy duty drugs to treat my
pain than it was to get a doctor to consider why I might BE in that much pain.
The medication I take daily is truly life-altering and I couldn’t do without it. I’m very,
very grateful to have access to it as my quality of life would be severely limited without
it.
Don’t think that you need that rubber stamp of diagnostic approval to get access to everything
you need- some help is available here and now.
6. REMEMBER THAT YOUR DOCTOR IS HUMAN
We realised the other day that the majority of our baby’s family either work or have
worked for the National Health Service: one mother, two of four grandparents, all three
aunts/uncles
(what’s the word for that)
two great-grandparents… (who are MY grandparents) So we’re a pretty medical family.
But I also often forget that doctors are human beings and that I can talk to them like they
are.
- that sounds weird but I have a feeling you get it.
Doctors have a habit of talking in medical jargon or abbreviations and forgetting that
the rest of us have absolutely no clue what on earth they’re talking about.
So if you’re in an appointment and your doctor is saying something that you don’t
understand, it’s perfectly fine to tell them to stop and start again but this time
in plain English. If you need them to slow down then just explain and they will.
It’s YOUR appointment, it’s for you to get the information you need and also for
you to help the doctor determine the best treatment of care for you.
In many ways the path to diagnosis is a process of collaboration between you and your healthcare
team.
Realising that you can take control isn’t easy (I’m not going to say it is) and neither
is exercising it
- see earlier point about bringing someone along to hold your hand
But it genuinely does help in what can feel at times like a very unnerving process.
Diagnosis is the common goal. Together with your doctor’s knowledge of medicine and
your knowledge of your body, you can meet in the middle to make that possible!
Provided your doctor is patient and kind and not rushed off their feet...
- again, we’re all human…
7. TRUST YOURSELF
Somewhat just touched on this but… you know yourself best. If you believe something to
be wrong with your body or mind then… something is probably wrong.
However, when you go through the process of being tested over and over again only to be
told that nothing is wrong with you… well that can be disheartening and make you doubt
yourself!
But a lack of diagnosis doesn’t mean your symptoms aren’t real.
And not perfectly aligning with a ‘official’ symptoms of a diagnosis doesn’t mean that
you’re incorrect either.
No two bodies are the same!
Mental health is really important when it comes to looking after our physical health
but it’s something we don’t really talk about or think about enough I find.
The struggle to get diagnosed is just that: a struggle.
You’re going through something very challenging, often being met with resistance and told you’re
incorrect, mistaken (or sometimes that you’re flatout lying).
Seems like that requires a bit of therapy or a bit of love to me right?
Often we hear about the negatives of social media but, as someone who went through my
teenage years without any kind of online chronic illness community, I think it’s amazing
that mental health is more openly talked about now and also… that there’s less fear around
it.
I went through a really long period of my life battling to have my symptoms be recognised
as having a physical cause (which I felt they did, and which genetic testing proved they
did) rather than a mental cause (which was what most everyone around me believed)
It was such a thing that I felt I had to prove that I purposefully ignored my mental health
and what that process was doing to my mental health because it felt like i couldn't acknowledge
that anything had any effect on my mental health because if i did that if i acknowledged
that part of me was struggling independently of that it was making me struggle more
That somehow that was downplaying the physical part. That it was giving in. that i wasn’t
championing my own cause enough.
Which of course is completely not true. But because I felt like I didn’t have someone
else in my corner who was saying the same thing as me I couldn’t even talk about it.
Which was not good.
If there is anything you can take away from this is to make sure that you are looking
after all of yourself, all the parts of you not just the bits that you can identify as
being sick.
Don’t just be concentrating about the part of you that you can say “this part of my
system is going wrong and I’m looking for a diagnosis for it and I’m looking for treatment”
Make sure you are holistically caring for every single part of your body because you
need to be in good health to be supporting that bit of you that isn’t working so well
right now.
So whatever mental health care looks like to you: therapy, talking to friends or family,
spending time talking to plants or journaling, just make sure you are looking after yourself.
Because you really matter.
All of you matters.
It’s possible to spend years or even decades with symptoms that are being treated by doctors
but without a confirmed diagnosis. It isn’t like Grey’s Anatomy, I’m afraid, your
entire medical life won’t get wrapped up in a neat little bow in one episode- diagnosis
is a journey, not a single event. Remembering that is vital for your wellbeing as you move
through the process.
So good luck on your journey and congratulations to those of you who have reached that point.
I always like to say ‘congratulations’ when people tell me they’ve been diagnosed
with something because honestly, you deserve both a party AND a sit down for getting through
the drama of THAT process!
I have so much love to you all.
Thank you so much for watching, and thank you to Surfshark for sponsoring today’s
video! Remember, click the link in the description and use the code ‘JESSICA’ for 83% off
Surfshark plus 3 extra months for free.
And I’ll see you in my next video!
Today’s Kellgren Fozard Members’ Question is from Rosario: How did you come up with
the names Walter and Tilly?
Fun fact, Claudia and I both have great-grandfathers called Walter. That’s not why he is named
Walter though, I just really liked the name Walter. Tilly is named after Matilda the Roald
Dahl character.
Also WaltER and MatildA end the same way as JessicA and ClaudiA (you might have noticed)