Having a good relationship with your doctor is very important when you’re living with a chronic illness – it’s likely they will be working with you to manage your condition for a long time, so you need to feel comfortable asking questions and discussing difficult subjects.

When you have an illness like an MPN, that is rare and that you will have the rest of your life, a good relationship with your doctor is particularly vital. Even a hematologist may not have seen many cases of the condition before – and as the symptoms of MPNs can vary significantly between people, your case may be unique.

Some tips

Here are some tips for having constructive interactions with your doctors.

  • Track your symptoms

As your symptoms might change and develop over time, it’s a good idea to monitor them and report anything you notice to your doctor. This gives your healthcare team the best chance of making sure you have the right management plan, as and when you need it.

Not sure whether something’s a symptom or not? Write it down and let your doctor know anyway. They will be pleased you are proactive and vigilant, as it helps them do their job well.

It’s also important to track symptoms that don’t bother you, or that you’ve grown used to. Even if you can put up with them, they may still give your doctor important clues about your health.

  • Stay calm

A doctor’s consulting room can be intimidating, especially if you’re already worried about your health. You may feel more confident if you take a trusted friend or family member with you. And calm yourself in the waiting room by taking slow, deep breaths, so you don’t feel nervous when you go in.

  • Be prepared

Ever had an experience where you’ve had loads you wanted to ask your doctor, only to find your mind has gone blank in the appointment? Get around this by making a list of all the things you want to ask in advance. Keep a notebook to write down things when you think of them or keep notes on your mobile phone.

Before an appointment, review your notes and prioritize your comments or questions. When you get to your appointment, say you have a few questions and don’t be shy about using your notes. If you have a lot, you might not get through them all, so prioritize your questions.

  • Do your research

Some people like to arm themselves with information so they have a good understanding of their condition and potential management options. If you’d like to, you could research your MPN online. This may also help you think of issues to bring up in your next appointment. Ask your doctor to recommend some good websites or give you leaflets you can browse.

Remember: While the internet can be a valuable source of facts, there’s a lot of incorrect information out there and you may read some things that are just people’s opinions, and not necessarily accurate. So stick to reputable websites – for example, those run by reputable hospitals, recognized charities or government bodies – and if you do come across anything that makes you feel concerned, discuss it with your doctor.

  • Get clarity

MPNs are complex conditions and doctors sometimes use scientific words that may be complicated to understand. Don’t be shy about asking for an explanation if you don’t understand a term or what your doctor said or meant. Your doctor won’t want you to go away feeling confused or worried, so it’s always better to ask for clarification.

  • Be honest

If you’re feeling low, it’s important you say so to your doctor. You might be reluctant to admit it, but it’s the only way the doctor can help you, and you will likely feel better by discussing it.

Be honest if you haven’t been following their treatment or management advice; that will help them understand why your symptoms haven’t improved.

If you are having emotional problems, your doctor may have dealt with these issues many times before. Your mood can impact how you feel and how you manage your condition, so open up to your doctor.

Unhappy with the mangement of your MPN?

If you have any doubts about your diagnosis or how your doctor has suggested managing your condition, you need to discuss this with them.

For example, perhaps your doctor has suggested a “watch and wait” approach for now, and you feel worried about this method. It’s important to let your doctor know how you feel. The chances are your doctor will welcome the opportunity to explain their decision, and will be able to reassure you.

Conversation starters:

  • “I’ve been thinking about the approach we discussed and I feel a bit worried. Would you be able to explain it more to me?”
  • “I understand your reasons for saying this, but I need some reassurance this is the right way to go. Can we talk it over?”

Get a second opinion

If you feel concerned about your doctor’s approach to your MPN, you could ask for a second opinion. While this can feel awkward, it’s common for people with rare conditions like yours to ask for second opinions.

When doctors may not have seen the condition many times, seeking the input of another can mean you end up with a pool of knowledge, which can reassure you you’re getting the best advice and care. You might end up seeing a doctor who has more experience with MPNs and knows more about recent developments than your first doctor. On the down side, you may end up having further tests and you may be given different suggestions and even a different diagnosis, which could be confusing.

If you do decide to seek a second opinion, let your doctor know so both doctors have a full picture of your case.

Conversation starters:

  • “As my condition is so rare, I’d like to ask another doctor for their opinion as well. Is there someone you’d recommend?”
  • “I’d like to see what another doctor says about my condition, just to cover all my bases. Would you be able to help me find someone?”