5 tips for surviving diagnosis delay
Sometimes you get sick, go to the doctor and they can’t tell
you what’s wrong or make you better. At least not right away. This post is
dedicated to that period when you’re sick but don’t have a label for it (aka
‘diagnosis delay’).* I’ve written this with women who go on to be diagnosed
with endometriosis—which can have a diagnosis delay of around 8.5 years!—in mind but it can apply to anyone
living in the limbo that is waiting for a diagnosis.
Note. These are suggestions
only. When I was particularly unwell a few years ago, I often felt like a ‘bad
patient’ when I didn’t do something that was recommended to me by a health
professional. But you are the expert in you, your body and your life. If
it doesn’t feel right to do, then don’t do it. Although it is worth noting that
sometimes you might feel like you can’t do something when, with a little push,
you can and you end up being glad you did. It can be hard to know when to take
it easy and when to push yourself; I suspect it’s something you get better at
knowing with age and experience…
1. Find a good GP
Having a GP (general practitioner) you know, like and trust
can make a difference to your healthcare experience. A good GP will work with
you to ensure you receive quality care for your symptoms. While GPs can provide care for some conditions, a large part of their role is to identify
when a referral to a specialist with more training and experience in the area
of concern is needed.** They can also be useful at managing your care when you
see lots of different health professionals.
Some people talk about ‘doctor shopping’ (trying out
different doctors until you find one that you like) as being a bad thing. But I
think it’s a smart thing! The service that doctors provide can vary greatly and
finding one that you gel with is important. So get your shop on!***
2. Track your
symptoms
Keeping a record of your symptoms can give you and your doctor/health
professional a clue as to what is happening in your body. It’s often also one
of the first things a doctor will request so if you already have a record with
you, you can potentially skip an appointment (yes please!).
It can be time consuming to record such things so try to
make it as simple as possible. A nice example is the Jean Hailes period & pain symptoms diary – you could adapt this to lots of conditions/symptoms. A food
diary may also be a good idea if you think you have food-related symptoms.
3. Find your support
squad
Life can be hard when you feel awful but don’t know why or
what to do about it. Surrounding yourself with support is essential!
Sometimes people who you thought would be in your support
squad turn out not to be. People often struggle to be compassionate about
another person’s circumstances if they haven’t been through it themselves. So
find your people! That is, find those who live with a chronic illness and know
what it is to wait for diagnosis/care/treatment. This may be online in Facebook
groups or forums (have a Google to find them), or it could be in person at local
support groups (ask your GP or Google).
You may also like to consider adding some professional
support (e.g. a health psychologist) to your squad. This is not because your
symptoms are in your head!! But because this is a tough card that life has
dealt you and there are professionals who can help you figure out your next
play. Ask your people for recommendations or—you guessed it—have a Google.
4. Try things that are
known to improve general health
You might not yet know why you feel unwell but we do know
there are a few things that can improve everyone’s health more generally. A
balanced diet and adequate exercise are the two most established factors. This
can be hard to do when you’re sick, I know. But they are options when you feel like you have none. Start small and think big. For
example, see a dietitian (I recommend a dietitian over a nutritionist because of this) and review your current eating ways. Or try one of the many great low
impact (e.g. yoga) classes on YouTube that you can do in the comfort of your own
home.
Other things that generally help people feel better are:
massage, meditation/mindfulness (try the Smiling Mind app, for example), and
socialising with friends and family (don’t feel up to going out for dinner? Movie night
with the girls!).
5. Treat yo’ self!
And finally, BE KIND TO YOURSELF. Being sick can be awful at
the best of times let alone when you don’t even know what you’re sick with. This
may seem like the simplest step I’ve listed but in practise I think it is the
hardest. Particularly if you’re a woman. There is a deeply ingrained
expectation within our society (and many others) that women are responsible for
looking after everyone – partners, kids, parents, friends…the list goes on! But
you are important and worthy of care. This is not to suggest that if you ‘just
relax’ you’ll get better. That’s obviously ridiculous. Rather, the idea is to
go gentle, take a breather, and congratulate yourself on making it through
another a day in limbo.
Good luck!
Kate xx
*Sometimes people don’t want a label. There is no right or wrong way to go about
these things. Being unwell doesn’t mean you owe anyone else to become ‘better’!
But for those of you who are seeking a medical name for what you’re
experiencing, this post is for you.
** (My) research suggests that some GPs try to treat patients
when perhaps a specialist would be better qualified to do so. You are entitled to a clear explanation as to why they do not wish to yet refer you to a
specialist (and to seek care elsewhere if you are not happy with this
explanation).
***I acknowledge this can be hard to do if you live in an
area with limited options. In fact, having grown up in a rural area I
experienced this first hand! You may have TeleHealth options (e.g. seeing a doctor
over Skype) in your area– have a Google.
Image via Death to the Stock Photo