Hi there, My name is Roberta Distante, I’m a 38-year-old Italian PhD economist based in Copenhagen, Denmark.
“Let’s observe symptoms and developments for some time. I would like to be cautious before diagnosing you with fibromyalgia; you’re too young”
The look in her eyes was sincerely compassionate and worried. This is how one of the best rheumatologists in Italy – if not in Europe – introduced me for the first time to what could sound like a terrible sentence for a young woman (and recent mother to her first daughter).
My story of disease started soon after giving birth to my first (and only) child, when I was 32 years old. I have been diagnosed with undifferentiated connective tissue disease and fibromyalgia, 3 years after the first worrisome symptoms appeared and after travelling around Italy to be visited by the best doctors in my country. This story of mine is similar to that of other young women; it’s a story of pain, dismay, frustration, fight, sorrow, awareness, acceptance, self-compassion, adaptation and, eventually, pursue of new standards and goals. This is a story of determination, resistance, strength, and hope.
I have gradually become aware that I have been sickly since my late teenage years. I remember periods in which my swimming performance during competitions was affected by a sense of unexplainable fatigue. During university years, I remember how difficult it was to keep focus on studying. I attributed any défaillance to temporary periods in which life seemed to be simply a bit harder than usual; indeed, I pushed myself to successfully pursue a PhD, a post doc, a career abroad, all while investing in a family. By the time I got ready for having a baby, I had lived a rollercoaster of mild and alternate symptoms without paying too much attention.
While my pregnancy was simply perfect, giving birth was definitely a trigger. I will never forget how stressful and painful labour was; 6 hours of pure pain with no painkiller or even a soothing drug. The hospital staff did not do a great job in assisting me; believe me if I tell you that I got to know the most traumatic event of my life for my body. I was afraid I was gonna die.
The aftermath was a nightmare too: fatigue, sleepless nights, a hard start to breastfeeding and very little support around me. When I felt overwhelmed and lonely, almost scared that I wasn’t able to provide for my baby, I honestly thought that mine was a post-partum depression case. Seriously, my mind was melting down. Soon after, while I had a better routine in managing breastfeeding and baby, I caught a cold that lasted 2 months, never improving. Finally, a doctor and my mother-in-law, who is a biologist, insisted for a thorough health check. It was then that I discovered the root of my sickness: I had a high concentration of autoantibodies compatible with several rheumatic diseases. Yet, diagnosis was not around the corner, because it can be done only when the clinical situation matches certain established facts.
I had to persevere the frustration of stepping out the door of doctors’ offices with no diagnosis or hope to get help and improve my quality of life. I went through a period in which even people around me could not fully believe or grasp what I had and how to help me.
My symptoms have gradually worsened, with periods of unbearable hindrance and others with milder issues. Only a couple of years after, I got the first official diagnosis of fibromyalgia and later of undifferentiated connective tissue disease.
The moment they give your illness a name, you feel relieved,
no matter how hard it may sound.
However, with diseases like these, you don’t really have control over developments, and you don’t have specific treatments to help you. You learn how better to cope with it.
I cannot say I know how to handle it; some days I feel discouraged and sad, because I simply cannot rise over my pain, my fatigue, my poor sleep, my mental strife. However, I have learned how to seek help and support, I am learning to be compassionate with myself and my beloved. I know that I don’t want to give up on my dreams and I am fighting to live fully in spite of the disease.
In the stage of the journey I am in, my strongest realisation is that discipline, in a good balance with self-respect and self-indulgence, can make a difference.
I am working my mind around visualising a big but feasible objective and start a virtuous holistic process by trusting it will bring me somewhere better, no matter how far from the highest target. Diet and exercise can be our daily weapons to fight the collateral effects of our disease. I am planning to make my routine established and shared with a community.
I like the idea of contributing to both awareness around invisible diseases like ours and support a community, with practical examples and tips.
People out there, suffering from fibromyalgia and chronic illness in general: I hear you. I know you are processing a deep sorrow and that some days are as dark as hopelessness can be. Please, don’t despair! Resist, persist, learn, and turn your habits into ones that can accommodate your condition and help you thrive beyond all this. We can make it together! I will make it a priority of my journey to share any learning – so stay tuned and in touch!
You can connect with Roberta by following her on Instagram
Fibro Ramblings: Thanks so much Roberta! I am so grateful that you have shared your story, as each face and story added raises Fibromyalgia awareness.