Living with Invisible Illness: Arabella’s Journey with Fibromyalgia and Other Chronic Conditions

Hi, my name is Arabella, I’m 29 and originally from Southern Ireland, though I’m currently living in the UK. My life has been shaped by a number of health conditions, including Fibromyalgia, Hypermobility, Asthma, Underactive Thyroid, Iron Deficiency, Rotator Cuff Syndrome, IBS, and Costochondritis. On top of that, I’m currently awaiting potential diagnoses for ADHD/Autism and Adenomyosis.

Asthma and Hypermobility have been with me since childhood. At 18, I was diagnosed with an underactive thyroid, followed by Rotator Cuff Syndrome and Costochondritis at 20, Fibromyalgia at 21, IBS at 22, and Iron Deficiency more recently at 29.

The Fibromyalgia diagnosis was especially tough. I had been experiencing unrelenting fatigue, widespread pain, memory issues, and a host of other symptoms. Despite multiple visits to my GP, I was dismissed, with suggestions to simply “de-stress” by having a cup of tea. It was only after much persistence that I was referred to a rheumatologist who finally confirmed the diagnosis. However, I was given no information about what Fibromyalgia was or how to manage it. I felt scared, small, and helpless, unsure of what the future held for me. It’s only through my own research that I began to piece things together.

The Hardest Challenge

For me, the hardest thing has been coming to terms with the diagnosis itself. I spent years battling the unknown, feeling lazy and helpless. Others labeled me lazy, or accused me of exaggerating my pain. This took a massive toll, both mentally and physically.

Now, on bad days, when my joints seize and I’m unable to do simple things like laundry or cooking, the guilt is overwhelming. The worst part is that people can’t see my illness. It’s invisible to them but completely overtakes my life. From using a blue parking badge to wearing a green lanyard that indicates my condition, I’ve faced judgment and disbelief from others. Even some doctors have doubted my diagnosis, which makes things even harder.

In Scotland, I fought long and hard to receive disability allowance to help cover basic living expenses. The fight for recognition and support continues, especially with Fibromyalgia still not being fully recognized as a legitimate condition in Ireland.

Finding Joy in Tough Times

On tough days, I find comfort in simple things. Watching childhood films, especially Disney movies, brings me joy. Wrapping myself in a cozy blanket, surrounded by cushions, with a hot drink in hand—whether it’s tea, hot chocolate, or my latest go-to, Horlicks—brings me much-needed comfort. It’s all about finding those little moments of peace.

My Biggest Achievement

My biggest achievement is simply making it this far. From growing up in state care in Ireland, to facing homelessness and moments of deep despair, I’ve overcome challenges that seemed insurmountable. At times, I didn’t know how I’d keep going, but here I am, still hopeful, still dreaming of a pain-free life, and maybe even having a family of my own one day.

Advice to My Younger Self

If I could speak to my younger self, I’d say: "Trust your gut. If you believe something is wrong, fight for it. You are stronger than you know, and you’ll get through this."

How Chronic Illness Changed My Life

Living with chronic illnesses like Fibromyalgia has changed how I see myself, my relationships, and my future. In past relationships, the effort of dressing up, socializing, and hiding my pain became too much. Canceling plans due to flare-ups led to misunderstandings and, eventually, the end of those relationships. Now, I’ve accepted that not everyone will understand, and I’m content being single, without the added drama and stress.

Tools and Strategies for Managing Health

One thing that’s helped me is the Finch app, which helps me stay motivated and manage my mental well-being. It sends me reminders to take care of myself, eat, drink, and even take my medication. On better days, I find comfort in gaming—Animal Crossing, Fortnite, and The Sims have all been great distractions from the pain.

Addressing Misconceptions

The biggest misconception about Fibromyalgia is that it’s either “not real” or a condition reserved for older people. I was diagnosed at 21, but I had symptoms as early as 14. Chronic illness and disability don’t discriminate based on age. People have even accused me of faking it for benefits, which is incredibly hurtful. I wish more people understood that just because you can’t see an illness doesn’t mean it isn’t real.

Maintaining Hope

When things are tough, I remind myself of everything I’ve already survived. Looking back on my hardest days, I realize how strong I am. I also hold on to hope that one day, a cure or better treatment options will become available. Until then, I’ll keep pushing forward.

Advice for the Newly Diagnosed

For anyone newly diagnosed with a chronic illness, please be kind to yourself. Don’t push yourself out of guilt, and don’t ignore your body’s signals. If you can, prepare for flare-ups by creating emergency kits with items like fluffy socks, snacks, drinks, and pain relief. And know this—you’re a warrior, and you will get through this.

Self-Care and Well-Being

I’ve learned to prioritize self-care by recognizing my limits. When things get too overwhelming, I stop everything, take a hot shower, put on soft pajamas, and focus on calming activities. It’s about knowing when to pull back and give myself the rest I need.

Future Goals and Dreams

Living with chronic illness has made me reconsider my future goals, particularly my dream of becoming a mother. I still hold onto hope that I can have a family, whether through pregnancy or adoption. As someone who grew up in care, the idea of giving a loving home to a child is incredibly meaningful to me.

The Role of Healthcare

Sadly, my healthcare experience hasn’t been the best. I’ve had limited support, with doctors often not knowing how to help. But I hold onto hope that things will change, and that Fibromyalgia will gain greater recognition, especially in countries like Ireland where it’s still not fully acknowledged.

Understanding Chronic Illness

If there’s one thing I want the world to understand about chronic illness, it’s that it can happen to anyone. You can’t always see it, but that doesn’t mean it’s not there. Show kindness, patience, and understanding. We don’t owe anyone an explanation for using mobility aids, blue badges, or accessible restrooms. We’re just doing our best to get through each day.

Understanding Some of the Conditions I Live With

• Fibromyalgia: A chronic condition characterized by widespread pain, fatigue, and cognitive difficulties. Symptoms often include memory problems (sometimes called "fibro fog"), difficulty sleeping, and heightened sensitivity to pain.

• Hypermobility: This condition affects joints, making them more flexible than normal, often leading to joint pain, instability, and in some cases, dislocations.

• Asthma: A respiratory condition that causes difficulty breathing due to inflammation and narrowing of the airways. Common symptoms include wheezing, coughing, and shortness of breath.

• Underactive Thyroid (Hypothyroidism): A condition where the thyroid gland doesn’t produce enough hormones, leading to symptoms like fatigue, weight gain, and depression.

• Iron Deficiency: This condition occurs when there’s not enough iron in the body, leading to symptoms such as extreme fatigue, weakness, and shortness of breath.

• Rotator Cuff Syndrome: A condition that affects the shoulder, causing pain and limited range of motion due to inflammation or tears in the rotator cuff muscles.

• IBS (Irritable Bowel Syndrome): A gastrointestinal disorder that causes symptoms like abdominal pain, bloating, diarrhea, and constipation.

• Costochondritis: An inflammation of the cartilage that connects the ribs to the breastbone, leading to chest pain that can mimic a heart attack.

For more information, you can visit these resources:

• Fibromyalgia Action UK

• National Rheumatoid Arthritis Society

• Asthma UK