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