The Eternal Uncertainty of Being Chronically Ill

Being chronically ill has many challenges. There's the obvious part of it, where you feel exhausted and drained, living in a body that feels like a cage most times; trying to feel grateful for the mere act of being and existing, although deep down you feel resentment towards it for getting sick.

But there are other aspects of getting a life-changing diagnosis that are equally as hard. For me, an almost 26-year-old college student who had absolutely no clue about rheumatism before getting it herself, the most difficult thing is the uncertainty that my illness brought to my whole life. I was 22 years old when I started developing my first symptoms at the beginning of 2022, and I could have never imagined that they would turn into a rheumatoid arthritis diagnosis at the age of 23.

The unpredictability of a rheumatic disease itself can be very challenging.

You could try to control every single habit in your life, and you would still fail to know exactly when a flare-up occurs. It's like trying to play a game that changes its rules by the minute, as my body has different needs and capacities even during the same day.

But there are ways to stay sane in this situation, like:

1. Listen to your body and let it rest without guilt

2. Have patience if you ever need more time than the rest to finish a task

3. Prioritize your well-being over an exam, a meeting or a date and try to reschedule

Medical appointments and everything beyond the diagnosis can be stressful.

I have always felt an uneasiness about visiting a doctor. Wondering if they'll listen to me, or if I’ll have to prove how sick I am. Trying to stay positive, as they are the ones who can help you, but being wary of the practitioner, as they could also dismiss you. Sometimes doctors do not know exactly what you have; maybe they mislabel your ailment or give you the wrong diagnosis. And when the latter happens and we later receive the right one, we are juggling between relief that our symptoms get an explanation, but also increasing anger, as it feels so unfair to have suffered before seeing any improvement.

What has really helped me through my process is knowing that:

1. My reality is not up for debate

2. Trust my guts and advocate for myself if a doctor isn't considerate enough

3. Celebrate my courage after an appointment (maybe with a little treat or watching my favourite comfort movie)

My health also brings a lot of doubts to my academic life.

It has been inevitable for my goals and dreams to change after my diagnosis. As a classical singing student, my career is very physically demanding. I have many lessons where I have to sing and perform, and all of this can really take a toll on my body. When I started my studies and I was still healthy, I wanted to try and have a performing career singing operas on stages. Once I got sick, my plans had to change. I am now aiming for a teaching career, where my routine can be more stable and my body can get more rest, but still be in contact with what I love most: classical music. I, as well as many others, do grieve the dreams that will not be fulfilled, but I learned how to find joy in new beginnings with my arthritis. I can still have a fulfilling life even if sick, as my dreams don't define me; my capacity to keep dreaming does.

Nonetheless, I am still questioning myself all the time:

1. Should I ask for curricular adjustments during my exams?

2. Should I ask my teachers for more adaptations in our lessons?

3. Should I think about changing my career path completely, or should I keep on trying, as hopefully I will get better with the right medication?

What has calmed down the anxiety induced by this never-ending hesitancy is to stay focused on what I can control, and let things arrive, if they ever do: I will simply cross that bridge when I come to it.

With these uncertainties, choices need to be made.

It is impossible to predict the future (will I be in a flare-up tomorrow, how well will my medication work in three months, etc.), so we need to try to stay grounded in the present and plan as we go. Sometimes a decision must be made even when we are unsure if it will work out. But that's part of the process, accepting that if things don't go our way, it's not because we don't plan or reflect enough; it's because there's always this infinite uncertainty.

To anyone struggling with these issues, I see you. A rheumatic disease can be extremely isolating, but others are carrying through the same burdens, doubts and fears as we do. So, in case you relate to this, I understand your feelings, and you're not alone in this! Hang in there!