Living with chronic illness can usually mean one thing, and that is seeing many medical professionals to find a diagnosis, and treatment. Yet trying to find the right doctor can often be a challenge. These are my 5 tips to help with this process.
Different (and difficult) medical experiences
Let's start with what I will call more 'problematic' doctors. This can vary from being unhelpful to more serious medical gaslighting.
There are the ones that sit there and look bored as you talk about the symptoms that have turned your life upside down, or don’t bother to look at you at all and instead stare at their notes or computer screen. Those doctors who dismiss your symptoms and make you feel small, or give you a withering look and say that you can’t possibly have X,Y or Z because you’re too young / it’s a rare condition / it's probably anxiety / the symptoms don’t make sense.
On the other hand, there are some brilliant doctors out there. This type of doctor takes you seriously, carefully considers what you are saying and refers you for tests if they are needed. They empathise with your situation and weigh up the best course of action.
When you get home after the appointment these doctors make you feel as though a weight has been lifted off your shoulders, because now they are dealing with the situation and, hopefully, things will improve under their care.
Tips for finding a good doctor
The good doctors can be hard to find and it is true to say that they may have longer waiting lists as they are more in demand.
In the UK, it is often the case that GPs (primary care doctors) will simply refer you to the local hospital. Yet you have a legal right to request which hospital / organisation and which consultant you see for a first referral for an outpatient appointment,** a fact that some doctors either don’t know or try to bypass.
This is an instance where you may have to advocate for yourself, rather than be guided by the choices of the doctor (or nurse). Print off the relevant passages of the NHS Choices Framework and take it with you if you think you may have some issues requesting a referral from your GP. I have linked the relevant webpage below.
Here are some ways to find a specialist doctor to manage chronic illness that I have found to be helpful:
1. Ask your existing doctors
Ask existing doctors or other healthcare providers that you trust for their recommendations – or even a referral if this is possible and applicable to your healthcare system. My cardiologist was recommended to me by a neurologist, and my hypermobility doctor and the physiotherapist that I saw for that issue were recommended by that cardiologist. It is like a spiderweb of connections, each person knowing a helpful and knowledgeable doctor for you to see.
This approach can be particularly helpful as the doctors or other healthcare providers may know each other and work together. My cardiologist, neurologist and immunologist informally work together and so will email each other about my care, which has been very useful at times. They know not to put me on a medication that may affect a condition that another doctor is treating me for, and will check with each other whether it is OK for me to have a test or procedure in light of my multiple conditions.
2. National (or international) associations
Most medical conditions have a national (or international) association for that particular condition. Have a look at their website to see if they have a directory of doctors that specialise in the condition which you suspect you may have, or have already been diagnosed with, but want further advice / tests / treatment. For example, the POTS UK website has a list of doctors that specialise in this condition and their location in the UK.
3. Look up major hospitals nearby
Look up the major hospitals near you or that you are willing to travel to, and find the lead consultant, or particular specialist, of the clinic or department most relevant to your condition. This was how I found the clinic that I was a patient of when I was first suspected of having fibromyalgia by my GP. I spent some time googling fibromyalgia clinics at the main London hospitals, and then chose the one that seemed to offer the best holistic service and gave me options to see not just a doctor, but also a dietitian, occupational therapist, physiotherapist and CBT counsellor if I wished to use these services.
If you are in the UK and want to see them on the NHS, then you can ask your GP for a referral. If you prefer to see a doctor on a private basis, track their private clinic down online (or, as I have done, be cheeky and phone their NHS secretary and ask for their private clinic details). Be mindful that if you wish to see a doctor privately, then it is likely that you will have to pay for any services or tests unless the doctor is willing to refer you back into the NHS. Something to check with their secretary prior to booking an appointment.
There are some websites that I have stumbled across that ‘rate’ doctors based on patient reviews. I’m not sure how I feel about this as a way to find a doctor to manage your chronic illness, and it isn't something I have done myself, but if you are struggling to find someone then it is a possible route to go down if other ways to find a doctor haven't worked for you.
5. Ask on social media
Ask on social media! If you have an Instagram or Facebook account, which most of us do, and are comfortable doing so, either ask in a post, or if you have online friends with similar conditions that live in your area then send them a private message. Patient-to-patient recommendations can be really helpful as you don't just get the 'official' line on the specialisms of a doctor, but also how they talk with their patients, their demeanour and how they involve the patient in their treatment pathway.
Do you have any other ways to find a good doctor to manage your chronic illness? Please do leave a comment below to share any tips that you have!
*Not helpful on a low fodmap diet . . . 😉
** Some exceptions apply - see the NHS Choices Framework for more details.
Don't forget to pin the post!
Please follow the advice of your doctor as to all medical treatments, supplements, and dietary choices, as set out in my disclaimer. I am not a medical professional, and this is simply my story and the resources that are helpful to me.
Katie Clark says
It's amazing toe hi ow similar the steps are for the UK and the USA ( if you have insurance). Where you mention MHS, insert your insurance coverage. Although, unbelievably, not all Americans have insurance. Then, everything is out of pocket and too expensive.
Just yesterday, I contacted Dr. Daniel Claw of the University of My. He's a world renowned Fibromyalgia researcher. He actually responded to my request for a fibro specialist doctor in Michigan. He couldn't give me ANY ONE! He gave me a doctor in Kentucky-6+ hours drive. Ugg!
The system of insurance seems baffling to me to be honest. It feels so strange that people who aren't doctors can have an impact of patient care and get to make decisions about it.
Sorry you are having to travel so far, that's quite the journey. I hope that the doctor is at least worth it for a six hour drive . . .