(A collaboration with DiverseMedEd)

If you live with a chronic illness, preparing for a new doctor for the first time can feel overwhelming. Where do you start? Will you have enough time to tell them about your complex medical history? Will they even be familiar with your condition?

If you find the lead up to medical appointments challenging, its important to know that you’re not alone. Many chronic illness patients say that they struggle with depression and anxiety at this time. Unfortunately, a lot of us have been subjected to experiences of medical gaslighting, negligience, or trauma, or simply feel a huge weight of responsibility when it comes to advocating for our own health due to inadequate support.

Sadly, the medical system is also stacked against both patients and doctors when it comes to managing chronic illness. There is often insufficient education about chronic and complex conditions in medical school and/or a “one size fits all” approach to dealing with them. Appointment times are often too short to discuss multiple or complex health problems, and doctors are often overloaded with work, unable to spend adequate time learning more about rare conditions or providing individualised care to complex patients.

Because of this, I am teaming up with Omer from DiverseMedEd to create a series of posts about how we can foster better communication between chronic illness patients and their doctors. Omer is a future doctor with a special interest in diverse patient care. He started DiverseMedEd to combat the lack of education in medical school about best practices when caring for diverse patients. He already has a number of informative posts about creating an inclusive environment for patients with disabilities, neurodiverse patients, and racially and gender diverse patients.

Today I will be discussing the key things chronic illness patients can do to prepare for a new doctor, with a focus on setting clear priorities and boundaries in order to maximise the chance of a productive and comfortable experience for everyone involved. When you’ve finished reading, be sure to check out Omer’s post about how doctor’s can best conduct their first appointment with a new chronic illness patient.

What should I bring to the appointment?

A support person

A woman wearing an orange headscarf sits in a examination chair. .A support person stands behind her while they look at the documents being shown to them by her doctor.

Bring someone you trust with you to the appointment; like a parent, partner or friend. Even if you have been dealing with your condition for a long time, no one is perfect! It can be hard to keep track of everything when you have a complex medical history. 

A support person can help ensure that the doctor gets all the details that they need, and can also help you remember everything that was discussed at the appointment after the fact. This can be especially helpful for patients who have experienced medical trauma and may experience memory gaps after being in a medical setting.

Similarly, if you have anxiety about asking certain questions or having certain medical procedures done, a support person can speak up on your behalf. 

If they live with you or spend a lot of time with you, they can also “bear witness” to your symptoms or concerns if you feel that the doctor is not understanding them or not taking them seriously enough.

Unfortunately, many hospitals are requiring patients to attend appointments alone during the COVID-19 pandemic. However, most will wave this requirement if you have an illness that means you require assistance (such as having reduced mobility). If you do not fit into this category, I suggest giving their administrative team a call and explaining why you need a support person. Explain why it is an issue of safety and/or why it will potentially be a waste of the hospital’s time if you are forced to come alone. If you’re still denied support, turn up with a letter from a psychologist or a patient advocacy group explaining why you need a support person and don’t take no for an answer!

Clear goals

Why are you seeing a new doctor? Are there particular areas of your health that you are unhappy with? Do you have brand new symptoms? Is your current treatment regime no longer working for you? 

While it is important to give the doctor an idea of your full picture of health (more on that later), the more specific you can be about your immediate needs, the faster the doctor will be able to help you, and the better your chances will be of making progress at the first appointment.

Clear boundaries 

A black and white image of a woman holding up her open palm in front of her face.

It is ok to say NO to things! Someone’s status as a doctor does not dissolve their need for your consent. If you already know that a specific treatment does not work for you, or a certain procedure aggravates your condition, say no, and be prepared to walk away if they will not listen. 

For example, I am no longer willing to “perform” the Beighton Scale tests (a common measure of hypermobility), as they aggravate my joint pain for days afterwards. In cases like this, you should try to bring clear documentation of the last time these tests were performed (more on this in the next section).

If you have medical trauma, it is ok to explain to the doctor that you don’t feel comfortable undergoing certain procedures at your first meeting. Explain what you would like to use your first appointment for, and that you would be happy to follow up with them at another appointment for anything else that they would like to do. 

It’s also a great idea to discuss your boundaries with your support person ahead of time so that they can have your back. 

X-rays and test results

An x-ray of a human tibia and fibia.

This one is pretty self-explanatory. Bring any recent test results when you meet a new doctor. This will ensure that you can “hit the ground running” at your first appointment, and prevent your physical or financial resources from being unnecessarily depleted by repeat testing (remember what I said about the Beighton Scale earlier?).

You should also bring any test results or paperwork (including notes from previous clinical exams) that prove certain diagnoses or rule out key problems, so that you and your new doctor can start moving in the right direction as soon as possible. It’s also important to bring this documentation to keep track of any tests that may need to be repeated at certain intervals to monitor the progression of a disease, or to screen for certain problems that you remain at risk for.

Keeping clear documentation can also help safe guard you against certain forms of medical gaslighting.

A comprehensive medical history and list of medications

The author, Jess, smiling while holding up her personalised medical history passport.

This is very important for ensuring that a doctor does not accidentally suggest a treatment that may be contraindicated or inappropriate for you.

When concocting this, you may consider making both a shorter and longer version: ie. a comprehensive history in chronological order, AND a shortened list of what is currently bothering you/what you deem most relevant. This way you can cater to time and your comfort level, but the doctor still has the opportunity to identify things from your extended history that you may have previously dismissed as irrelevant. These summaries should be printed out so that the doctor can read them at a later stage if you run out of time.

The same goes for medications, including supplements and OTC medications. In complex cases it is very easy for small details to be missed, especially when it comes to medications. Remember, doctors are human too!

I understand how much work it can be the keep track of and document all of these things in a logical way. I highly recommend the Corra app, a comprehensive health tracker which can export documents to give to medical professionals including medication use, symptom tracking, and pain/injury information.

I also recommend Medical History Passports. These are personalised booklets which contain your medical history, medications and diagnoses, and anything else you would like to have included. They can also be customised with key information appearing on the front cover in case of an emergency. Personally, I find it exhausting going through each medication (how it’s spelled…what’s it for…) with a new doctor, and find it extremely satisfying to slap this booklet down in front of them instead.

P.S – both of these businesses are disabled owned, so you’ll also be supporting a fellow spoonie 🙂

What questions should I ask?

Ok you’ve made it to the appointment, hurray! Now what should you ask to make the most of your limited time with the doctor?

Would you like me to start by explaining my medical history, or would you prefer I begin by telling you the specific reason that I am here today? 

A female patient is sitting on an examination table in a blue hospital gown. She is speaking to a doctor in a white lab coat.

Personally, I have found that different doctors have very clear preferences when it comes to this, which can often create a communication barrier if they run contrary to your own plans. 

I used to get very irritated when doctors would interrupt me by asking lots of questions about my history when I was trying to explain the reason I came to the appointment. I have since realised that some doctors prefer to know this information first, so that they can have it in mind when discussing your more immediate problems.

Asking this question upfront is respectful of the doctor’s time and process, while simultaneously showing them that you mean business.

A similar tactic can be employed when discussing medical symptoms and triggers. Some doctors will first want to hear about your symptoms and limitations in plain terms without any bias, and then ask questions. On the other hand, some will want to know the progression/timeline of your symptoms, and any patterns you have noticed. Clarifying their preference upfront can help you avoid a lot of miscommunication and frustration!

(Catering to a doctor’s preferred process does NOT mean that you should stay with a provider that doesn’t EVER want to hear about your opinion or observations of your own body!)

Would you like me to explain the ways in which my chronic illness impacts me, or you would prefer me to send you that information to read later? 

If you have a rare or chronic disease, it is very important that your doctor understands the ways that it impacts you personally. However, this can often be a long conversation, and doctors are often forced to squeeze patients into tiny timeslots. 

If the doctor is not already knowledgeable about your specific condition, they may prefer to read about it before or after the first appointment, rather than discuss it on the spot. If possible, call or email their administration ahead of time and ask them about the doctor’s preference. Depending on the type of clinic you are attending, you may also be able to contact the doctor directly.

What are the risks associated with this medication/procedure? 

Unfortunately, not all doctors are forthcoming about the side effects associated with mainstream therapies, and it can be especially difficult for chronic illness patients to differentiate between the symptoms of their existing condition, and what could be a secondary affect of treatment. 

This question can help you make an informed decision about your treatment plan, and also give you an indication as to whether or not your doctor has put thought into how the purposed treatment may affect you specifically. 

This is especially important if you have a condition that compounds your risk of certain complications. (For example, the increased risk of excessive bleeding after surgery in EDS patients.) 

In what situation should I?” 

Go to the emergency room? …. Discontinue this medication? … Self-isolate? 

While we don’t want to always be thinking about the worst case scenario, the reality is that patients with chronic illnesses often deal with severe symptoms on the regular, and may have a warped perception of when we should consider something an emergency. 

Discuss what you regularly experience with your doctor in terms of physical AND mental symptoms. Ask them what you should do if they escalate, and in what circumstances they would be considered an emergency. Focus these questions around what is most relevant to your current situation. For example, as someone who experiences Migraine with hemiparesis, it was very important that I talked to my doctor about when I should get “Migraine” symptoms checked at the ER to make sure they were not in fact a sign of something more dangerous, such as a stroke.

How can I best follow up with you? 

A doctor in a white lab coat looks down at his smart phone.

It’s important to have access to your doctor when you need them. Especially, if you live with a complex illness. Some doctors may prefer you to ask any short follow up questions via email or phone, especially if they have a long waiting list for appointments. Opening up an extra channel of communication may also mean that your doctor can do things like convey test results or forward you referral letters without the need for a follow-up appointment.

Who would you recommend I see if I need urgent attention and you are not available? 

Patients with chronic diseases often find themselves in situations where they need to see a doctor urgently but the situation is not appropriate for the emergency room. (Think medication side effects, sudden flare-ups, lost prescriptions etc.) 

Your doctor will likely have a colleague that they can pass your file onto, allowing them to access information about your specific situation in the instance that you need urgent care.

This is important not only for your physical safety, but can also help with your emotional well-being if you have medical trauma and don’t feel comfortable seeing “just any doctor.” 

Is there anything else that you think I should be doing to maintain or improve my health?

A patient is holding an orange, foam tube. A medical professional is directing her to exercise her hands by moving it in a twisting motion.

You’d be surprised at the useful titbits a good doctor can you give when asked this question! I have learned some great tips about energy management and alternative ways to exercise by asking this question. 

As chronic illness patients it can be overwhelming to take on all the information and unsolicited opinions that are thrust upon us, but it’s important to stay open minded to new ideas, and make the absolute most of the extra support when we find a doctor that we trust.

I hope this post was helpful! Before you head over to check out Omer’s posts about how doctors can prepare for an appointment with a new chronic illness patient…let us know what YOU do to prepare for an appointment with a new doctor in the comments below!

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One thought on “Living with a Chronic Illness? Consider These Things Next Time You’re Preparing For a New Doctor

  1. Oh Jess! If only this was available to all new patients presenting at ED or clinics.
    Perhaps a version of it could be included in Upper School Health sessions .
    I know it took me a long time to come up with a much less comprehensive list.
    I know the last time I fronted the ED at Charlie’s I was better prepared thanks to your earlier blog on that topic
    Maybe the ambulance was held up while better half found the file, but with that, my thickened water and extra thickener as well as all my meds in the bag with the typed list on top.
    Thanks for all you are doing here, I say that, not only on behalf of patients but also the nurses trying to triage the place.
    I found that with that list, I was placed under the most appropriate registrar and was through to the best available Respiratory specialist.

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