How does your pain measure up?

Living with haemophilia often goes hand in hand with experiencing some sort of pain - whether this is pain from needles, pain from bleeds, or pain in your joints. This pain can be exhausting, which is something that people who’ve not experienced it struggle to understand.

To get a feel of how this pain affects you and your day-to-day life, we’d love you to have a go at the poll below. Once you’ve submitted your answers, you’ll be able to see what others in the community have said - by revealing results from published literature.

POLL TIME!

Have you experienced acute or chronic pain in the last 12 months*?

Select one of the following:
*Acute pain strikes in response to an event (like an injury or bleed), whereas chronic pain is caused by something persistent and can vary in how often it occurs or how intense it feels (like pain from sore joints or arthritis).1
In a study of 352 individuals with severe haemophilia who responded to the global PROBE (Patient Reported Outcomes Burdens and Experiences) study questionnaire.1 PROBE aims to enhance the voices of those with haemophilia in healthcare decisions, by investigating the condition from their perspectives.

Which of the following memes can you relate to?

Select all that apply to you:
In a study of 352 individuals with severe haemophilia who responded to the global PROBE (Patient Reported Outcomes Burdens and Experiences) study questionnaire.1 PROBE aims to enhance the voices of those with haemophilia in healthcare decisions, by investigating the condition from their perspectives.
In a study of 352 individuals with severe haemophilia who responded to the global PROBE (Patient Reported Outcomes Burdens and Experiences) study questionnaire.1 PROBE aims to enhance the voices of those with haemophilia in healthcare decisions, by investigating the condition from their perspectives.
In a study of 197 individuals with severe haemophilia who responded to the HERO (Haemophilia Experiences Results and Opportunities) questionnaire.2 HERO is an international study that aims to build a comprehensive understanding of life with haemophilia, to ultimately build advocacy and improve care for better outcomes.
1/2/3

Has pain ever interfered with any of the following?

Select all that apply to you:
In a study of 352 individuals with severe haemophilia who responded to the global PROBE (Patient Reported Outcomes Burdens and Experiences) study questionnaire.1 PROBE aims to enhance the voices of those with haemophilia in healthcare decisions, by investigating the condition from their perspectives.
In a study of 352 individuals with severe haemophilia who responded to the global PROBE (Patient Reported Outcomes Burdens and Experiences) study questionnaire.1 PROBE aims to enhance the voices of those with haemophilia in healthcare decisions, by investigating the condition from their perspectives.
In a study of 230 individuals with severe haemophilia who responded to the HERO (Haemophilia Experiences Results and Opportunities) questionnaire.2 HERO is an international study that aims to build a comprehensive understanding of life with haemophilia, to ultimately build advocacy and improve care for better outcomes.
1/2/3

Pain can really take its toll at times, but you can ask for better pain management strategies

Review the tips below for talking to your haemophilia team about pain management strategies

It’s time to ask for better pain management!

Living with pain often results in tiredness, frustration and anger, making it difficult to effectively communicate to those that can help. On top of this, pain is subjective – the tools used to measure pain might not be optimal and may differ from the reality of what you are experiencing.

Because of this, it is important that you, and others living with haemophilia, communicate effectively with your healthcare team so you can work together to achieve better pain management.

The following checklist provides some useful tips on how to successfully ask for a management plan that works best for you:

Prepare a list of thoughts or questions Bringing notes to your appointment can save you from forgetting the important things you wanted to discuss with your doctor.
Do your research Knowing about pain management can help you proactively ask questions or propose strategies during your appointments.
Bring a family member or friend Taking someone along to your appointments can help you have more confident, open conversations. They can also act as an extra pair of ears!
Clearly communicate Make sure you clearly communicate what the pain you’re experiencing feels like and speak up about any concerns. Try to be polite when you’re speaking and calmly repeat yourself if you think things are being overlooked or underestimated.
Don’t get distracted If the pain has left you feeling frustrated, it’s so important to keep your cool and stay focused on what you want out of the appointment, rather than getting distracted by other issues or disputes.
Listen Listen carefully to what your healthcare team tell you – they won’t mind repeating or explaining anything you don’t fully understand, so ask away!
Feeling inspired? Become an advocate for better pain management in haemophilia today!

To get you started, why not show others what it's really like to live with chronic pain? Visit the meme generator to create your meme

References

1. Noone D et al. Occurrence and impact of pain among patients living with hemophilia: An analysis from the patient reported outcomes, burdens and experiences (PROBE) study, (2018), Oral Presentations (OR7). Haemophilia, 24: 23–31. doi:10.1111/hae.13392.

2. Witkop M et al. Am J Hematol 2015; 90(S2): S3–10.

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When can we remind you about pain management?