Q&A: What’s it like living with Fibromyalgia?

Alternaleaf Team
Written by
Alternaleaf Team
May 12, 2024
Last updated:
May 15, 2024
If someone went to cuddle me, I would flinch because it would hurt.

This is Laura's daily reality with fibromyalgia, a chronic disorder that causes pain and tenderness throughout the body. However, as with any chronic disorder, symptoms can differ for each individual, making it difficult to understand what it’s like living with Fibromyalgia.

With May 12 marking World Fibromyalgia Awareness Day (also known as Fibro Awareness Day), the spotlight turns to a condition that quietly plagues millions. 

In a show of support, Laura has shared with us her decade-long journey with fibromyalgia. Her candid revelations offer an unfiltered view of life with this condition, from the initial diagnosis to the ongoing hurdles encountered in her everyday life.

When did you find out you had Fibromyalgia? 

Laura: I found out I had fibromyalgia in 2013. I had a glandular fever and felt like I didn't fully recover. If someone went to cuddle me, I would flinch because it would hurt. I hardly ever went to the doctor, but I happened to go to an appointment with my mum, and I mentioned it to her doctor. And he asked me a few other questions and said, “I really think you should see a rheumatologist.” 

So, I was given a referral, and it was confirmed in May 2013 that I had fibromyalgia.

How did you feel when you discovered you had this condition?

Laura: I had never heard of fibromyalgia before; like I said, “I rarely went to the doctors.”

I was a lifeguard and swimming instructor and very fit. I asked the rheumatologist when it would go away, and he laughed and said, “It doesn't go away.”

I then asked if I would die from this new diagnosis, and he replied, "You won't die,” but he did underscore the actions some patients have taken to “escape the pain." 

He then said, “I can’t really help you.”

“If you had rheumatoid arthritis, I could help you, but you don’t. You have fibromyalgia.”

He then wrote a fibromyalgia website down and told me to go home and look that up. That was the end of the appointment.

I felt scared, numb, helpless and alone all at once.

How has Fibro affected your lifestyle or daily living? 

Laura: Living with Fibromyalgia has taught me resilience and strength. It's a daily battle, but I've learned to manage my symptoms and prioritise self-care. 

I wish that people knew that Fibromyalgia is more than just physical pain; it can also affect mental and emotional wellbeing.

What do you wish people knew or understood about living with Fibro?

Laura: Explaining Fibromyalgia to someone who doesn't have it can be challenging. 

One way to describe it is by saying that it's a chronic condition that causes widespread pain and tenderness throughout the body. It can also lead to fatigue, sleep disturbances, and difficulties with concentration and memory. It's like being in jail inside of your own body.

I feel it's important to emphasise that Fibromyalgia is an invisible illness, meaning that even though someone may not look sick, they may be experiencing significant pain and other symptoms.

It's a complex condition that varies from person to person, but understanding and support from others can make a big difference.

Others must understand that even though we may not always show it, we're fighting a hidden battle EVERY SINGLE DAY FOR THE REST OF OUR LIVES.

It's like being in jail inside of your own body.

What ways of support have you appreciated from your community?

Laura: There is practically zero support in my community for fibromyalgia sufferers unless you qualify for NDIS, which I have been rejected three times for. 

I spoke to Disability Gateway, and the only service they could help me with was vouchers for half-price taxi fares to take me to hydrotherapy. 

I received the most support from my 72-year-old mum, who moved closer to live near me. She visits me most days, and if I'm in a flare, she will help me shower, wash up, and cook for me. 

My friends are somewhat supportive, but they just don't understand fibromyalgia and my limitations.

How do you raise awareness or advocate for others with Fibro?

Laura: I have a dedicated social media page for fibromyalgia. I have connected with people from all over the world with the same condition, and I share fibromyalgia memes and quotes on my page.

Additional Resources on Fibromyalgia

For further information and support on fibromyalgia, consider exploring the following resources:

  • Royal Australian College of General Practitioners (RACGP): The RACGP provides comprehensive information on fibromyalgia, including diagnosis, management strategies, and patient resources. Visit the RACGP website for more.
  • Pain Health: This initiative of the University of Western Australia offers a dedicated module on fibromyalgia. Explore their resources to learn more about managing symptoms and improving quality of life. You can read the fibromyalgia module on the Pain Health website.
  • Arthritis Australia: Australia’s leading national arthritis charity provides valuable insights into fibromyalgia, including its relationship to other types of arthritis and available support services. Learn more about fibromyalgia through Arthritis Australia.

Join the fibro movement: Make your voice heard

Laura uses her online platforms to amplify the voices of people with chronic conditions and illuminate the challenges they face.  

Now, it's your turn to join the chorus of voices advocating for better understanding and support. Anonymously participate in the Chronic Pain Australia 2024 National Pain Survey and ensure that your experiences contribute to a collective call for change.

If you or someone you know grapples with chronic pain, head on over to our Facebook and Instagram. Here, you can read more powerful stories, learn about alternative healthcare options, and empower yourself toward a better you. Plus, every shared experience fosters a community of understanding and solidarity, so the more, the merrier, we say.

Every voice matters.

Share your experiences anonymously in the 2024 National Pain Survey. No one should suffer in silence.

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