My blog is all about educating you about different disabilities and conditions. Chronic illnesses and disabilities are very different but very important subjects so I asked my friend Alessia to tell her story about living with a chronic illness.
Being diagnosed with a chronic illness is a daunting experience. While often not fatal, it changes life drastically nonetheless. Being diagnosed as an expat, however, adds a whole new dimension to it. In February 2012, I boarded a plane to London and have lived in the UK since. Despite being fluent in English, I wasn’t prepared with the vocabulary for explaining symptoms that are often hard to explain anyway or understand the medical jargon that would be spoken to me by the end of 2014. After merely two years in the country, I was to become better acquainted with the NHS and the law than many born here. I had no family in the country, and barely a support network of friends made here, which heightened the loneliness that many people say they feel when diagnosed with a chronic illness.
After a year working in marketing, I decided to start a degree in history and took a job in a coffee shop as it offered me the flexibility and relative peace of mind to study that I wasn’t offered in the other field (although I carried on doing that as a volunteer!). I would have never expected, at the age of only 25, that it would be too physically demanded, but by the second month of working full-time over the summer I was sitting in the doctor’s office with hands and knees so swollen they were more than twice their normal size. I got out of the office with a course of high-dose Naproxen (whose effects were to last a week only) and a referral to the rheumatologist at the local hospital. The wait is excruciating for everyone, but without loved ones to share the burden (except from thousands of miles away, where it becomes even more difficult to understand the extent of an illness) it can become unbearable.
The most difficult aspect of the initial months was that, without a diagnosis, it was harder to treat the symptoms, and therefore life was impacted, from day-to-day activities being hard to deal with to significant lifestyle changes (as a former gymnast, it wasn’t easy to have limited mobility and see my body change as a result). Once the waiting list for the rheumatologist had passed, and my visit had taken place, it became somewhat easier to cope. It is true that I was now reliant on medications to function, but having a name and an idea of what to expect meant finding my coping mechanisms, even though arthritis was never something I would think I would have at 25.
However, a diagnosis was just the beginning of a journey rather than the end. Soon a suspicion of a link between my joint pain and a series of gastrointestinal issues brought about a series of tests, beginning with the classic Tissue Transglutaminase Antibodies for coeliac disease, which resulted in a false positive. The state of inflammation remained a constant in my life, although 4 years after the first diagnosis, the rheumatologist (of a different hospital) is persuaded that my diet may have more of an impact on the pain than psoriasis originally thought, although research seems inclined to link all 3 together. New information can be a blessing or a curse: it can be the missing piece of a long-awaited diagnosis or make you wonder if you will ever know what is truly wrong with you.
The old adage goes that knowledge is power, and in the past 4 years I have begun to see why. A label meant not only that I could stop worrying about the other possible scenarios and begin focusing on a way to handle life better with the metaphorical hand of the card I was given; it meant a chance of finding a support network that would understand, thanks to social media and the chronic illness blogosphere. While the support of friends and family has a lot of value, being able to relate to someone’s experience helped me make sense of my own, in particular, understanding the medical implications and reducing the language barrier.
Over the past four years, many people have told me that they admired my courage in moving somewhere all by myself in my early 20s, but as the daughter of an expat who left her home at 18 (and was herself a daughter of expats!) I have always shrugged it off as nothing that special. That is until I realized life doesn’t always go to plan, and moving away means starting from scratch when it comes to the support network necessary to face an illness. And I was lucky I enjoyed the privileges of an EU citizenship when coming to the NHS. Insurance would have added an extra layer of stress I had to deal with on my own, but it was a civil servant’s problem to deal with the paperwork.
In the 4 years following my diagnosis, my situation has changed. I have settled enough to have a support network now moving forward, and my own business to work around my health rather than struggle to fit my health around the demands of a job. The fear of what happens next hasn’t disappeared completely, but it seems less daunting, as living with the conditions and its demands have become settled too. I do not know what my future holds, but so far I have been lucky enough to achieve a lot despite the hardships of the circumstances of a chronic illness, and the practical difficulties that come with being an expat, and that’s all I could ask for, really.
Thank you, Alessia for sharing your chronic illness story and if you liked this blog you can find her at www.theblondpond.com and she will soon launch her business at www.laurelandyew. If you are on Twitter, Pinterest or Instagram you can also follow her @theblondpond. I hope you all enjoyed this post and if you have any questions feel free to leave them in this post or reach out to Alessia on her blog!
Life with Spina Bifida is a personal blog that is all about my life with a disability, chronic pain as well as encouraging hope and positivity for those who are suffering. You are not alone!