As anyone with AS knows, diagnosis with a chronic, painful condition is a life-changing event – a burden which can be hard to bear without the right support. We asked nurse, patient advocate and chronic pain sufferer, Priscila Torres how she overcame the challenges of her disease with the help of her friends and family.
Whenever I think about my diagnosis, I remember how I cried when I had to tell my mother I was suffering from rheumatoid arthritis. It felt like such a reversal; me, her daughter, telling her that my body, as young as it was, was letting me down – that she would need to care for me when society, especially in my home country of Brazil, expects me to care for her.
“My diagnosis felt like the death of the me I knew –all I could think of was the burden I’d be on my family."
My maternal grandmother, for example, would be so worried and start fretting over me. Sure enough, as soon as she found out I was diagnosed with a chronic condition, she began preparing old family remedies, feeding me every kind of tea and cooking me nutritious meals. My mother was the same, spending every night coming to my room over and over just to see if I needed anything.
My young son immediately took responsibility for looking after himself and his things. I remember one day he was lying on the sofa with a fever and he said to me "Mom, I have a fever but, because I’m all grown up, I will get upstairs myself. I won’t ask you to carry me - I know you can’t anymore". It broke my heart. These were all acts of support, all born of love, but they made things harder for me. That’s why, after six months of having my disease, I realized I needed help.
First, I visited a child psychologist with my son to help him understand my condition. I’m a nurse so he was used to me going to the hospital. Now, when I go to hospital, I stay there for days at a time. The change, from carer to cared-for was confusing him.
The psychologist helped me explain my condition to him – a conversation I hadn’t had the strength to have alone. In time, my son understood and got used to the differences - today he is 14 and my rock. He understands my needs, helps manage my medicines, knows everything about my disease and is always alert to help with whatever is necessary.
Helping him understand gave me the words to discuss my condition with the rest of my family. My grandmother learned that teas and folk cures do not heal chronic diseases; my mother and one of my sisters became my ‘disease partners’, managing my treatment and care alongside me. This kind of support is vital because, with chronic pain, your decision-making is sometimes impaired - having a partner in your disease means having someone who always knows your wishes, even when you don’t.
The one thing my family never did was look at me differently because I am a "chronic patient" – they simply gave me the care and help I needed. This may sound obvious but the sad truth is that some people may not be there for you. My experience is that, after the diagnosis, many friends do go away; do not show up, do not call and, when they are there, look at you with curiosity, prejudice and pity.
This type of friend is not good for a chronic patient. We need support, strength, fellowship and sympathy. True friends offer all of these and it is worth explaining our condition and our limitations to get the most from the moments we share with them.
The big secret of living in harmony with your chronic disease and the ones you love is assuming that if you accept yourself, the world will accept you.
“Empower yourself and those around you with knowledge and your days at home will be calm and full of love."
I talk to hundreds of patients and I wish every one of them the consideration and care that my family has given me. Even in moments of full dependence, they helped me keep hold of my old self and it’s these moments of normality and peace that have helped me adapt to life with my chronic condition.
This article was written by Priscilla Torres, with help from the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.