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Living with an Invisible Chronic Condition

By 5 June 2024June 7th, 2024Health, Latest, MAI News

Living with an Invisible Chronic Condition

Invisible Chronic Conditions (ICC) differ in symptoms, and some conditions are taken more seriously or less seriously than others. However, regardless of the chronic condition, once it’s invisible, it has similarities in how you are treated, how you are regarded and how you may feel about yourself.

For Men’s Health Week 2024, we asked Pascal Derrien, CEO of Migraine Ireland about his experiences as a man living with an Invisible Chronic Condition.

Pascal’s Story

Pascal has lived with T1 Diabetes for over 15 years. Although it is not migraine, he has experienced many of the same biases, concerns, and mental health issues that men (and women) living with Chronic Migraine may have.

How long have you been a patient with an invisible chronic condition?

15years+

How has it affected your life?  

It does define my daily routine, but it does not define me.

Have you had to make many adjustments?

Multiple adjustments such as sticking to a routine (injections), diet and device management such as a glucose monitor.

How much of your day is affected by the condition?

It’s a 24/7 effort with daily milestone to reach.

Supports and Myths?

Do you find there is support for people living with invisible chronic conditions?

It depends on the chronic condition I would say for diabetes yes there is a system in place not the case for Migraine for example.

What is a common misconception about living with an invisible chronic condition?

If you don’t see it, it does not exist syndrome!

Reality of Living with an ICC

Do you ever feel isolated as a chronic sufferer?

At times yes

Do you ever feel stigmatised because of your condition?

Often implying limitations and other cliches that’s said I am a marathon runner and long-distance cyclist.

How has your condition affected your psychological health?

Anxiety peaks can come up at the least expected moment.

How has it affected your social circle?

Not so much per se but some people are not at ease with it partially because they don’t understand it!!

How has it affected your financial health?

Indirectly yes how can you avail of a life insurance policy or private health insurance.

Understanding

Do you feel that people in your life understand what it is like to live with an invisible chronic condition?

People who carry one Chronic Condition get it not the others definitely.

What would you like others to know about invisible chronic conditions?

Perception is not reality.

What would you like others to know about people who live with invisible chronic conditions?

We are not worth any less than you and we are not weak.

Do you feel your medical practitioners understand what it is like to live constantly with an invisible chronic condition?

To a certain degree but it is up the patients to speak and educate them too!!

What do you think needs to be done for there to be a better understanding of patients with invisible chronic conditions?

Education, awareness campaigns are key in order to debunk myths.

Recommendation

What have you learned about yourself throughout your journey?

Consistency is key quickly followed by acceptance.

How difficult do you think it is as a man to have an invisible chronic condition and be accepted and treated in Ireland?

Men in Ireland are extremely inhibited emotionally speaking including seeking and opening up about health issues!!

What would you say to any man who lives with an invisible condition but is reluctant to speak to HCP or family about it?

Don’t wait, engage learn and speak up!!! You might not have a second chance!!

Men’s Health Report Cards

Many men struggle with seeking help for illness, particularly if there is an element of the condition that is stigmatised, or society has a certain impression of those who live with a certain condition, or regarded as a woman’s condition, such as migraine.

According to the research by the HSE, Healthy Ireland Survey 2023, and Men’s Health Forum of Ireland, only 70% of men visited their GP in 2023 compared to 83% of women. Only 37.5% of men have GP visit or medical cards. For more information you can download the Men’s Health in Numbers Republic of Ireland Men’s Health Report Card 2024’ PDF from the MHFI website here – https://www.mhfi.org/news/1096-men-s-health-in-numbers.html

If you live with an Invisible Chronic Condition and are struggling with the various burdens that come with it, get support. It is out there. It could be ask simple as looking up the HSE Website or googling your condition and your country’s name to see what support organisations and groups are out there.

The information contained in this article is for informational and educational purposes. The information is not intended nor suited to be a replacement or substitute for professional medical treatment or for professional medical advice relative to a specific medical question or condition.