Having To Change With The (Rheumatic) Times

I got diagnosed with rheumatoid arthritis in 2023. Before getting sick, I was always busy. But once my symptoms started to appear, I simply could not keep up with such a packed schedule. Keeping up with college was impossible and I had to take a semester off, my social life had to be reduced to almost a non-existing one and I was not able to do house chores either.

My abilities had suddenly changed, and I did not know how to manage this new body. I could not control when or how a flare-up would occur, and I struggled a lot for a very long time.

First step: denial and disbelief

As many of us, I started by not being conscious of how serious my symptoms were. I was in so much pain, and I still pushed my body so much, thinking it was “not a big deal.” It took me some time to realise how painful and immobile my joints were because I just wanted to keep on with my schedule.

Once my body forced me to be aware of my illness, I started to feel emotionally frozen. I just simply could not believe how my reality had drastically changed within months. I was not used to resting at all, I almost did not have any free time in my schedule back then, and suddenly I was obliged to take a semester off and had nothing in my timetable but doctor appointments. 

Second step: acceptance and adaptation

During such a difficult time, I did find some things that made the process of accepting my new situation so much easier:

• Going to therapy: if someone ever needed advice regarding how to deal with chronic illnesses, this is the one thing I would tell anyone to start with. Having professional support for your mental health is a true game changer. They can help you manage your emotions and your thoughts, and it is very important for people with chronic pain to take care of their mental health, as we are more prone to develop anxiety and depression. A therapist can help you with things like guilt while resting or feeling worthless based on your work/productivity, which are very common problems within chronically ill patients.

• Meeting friends in a different way: chronic illnesses can be very isolating for many reasons, such as lack of energy, mobility issues or having a weak immune system. In my personal experience, I would try to keep on seeing friends, but asking them for adaptations: maybe they can pick me up with the car when I am in too much pain to be walking; maybe we can meet at my place to avoid big crowds; maybe we can just videocall if I am feeling too drained. Most important thing: keep yourself surrounded by love when things are tough.

• Asking for help: it sounds obvious, but it can be very hard. When we are sick, we deserve assistance with cleaning our house or grocery shopping, for example. Most of the time, people that are close to us feel helpless for not knowing how to support us on a daily basis, so it can be beneficial for both parties: your loved ones can take care of you on another level and feel useful, and your needs can be taken care of without you exceeding yourself.

• Setting boundaries: with such a big change in my life, I did have some conflicts with people around me. Out of ignorance, they would say something hurtful like “you don't look sick, maybe you should just try a bit more.” That would send me into a spiral of self-doubt, thinking I might be wrong and imagining all my symptoms, which would make me push my body way over its limits and have horrible flare-ups. What I learnt is that such comments are not okay and I am allowed to advocate for myself and tell them how wrong they are. Most of the time people apologised because they truly did not realise how that would affect me, and they changed their behaviour.

• Keeping in touch with my body: I started trying to be more conscious about how my symptoms were affecting me every day. There is a very thin line between checking in with yourself and overanalysing that I still struggle with. I think about how my body is feeling before doing an activity to know if I will crash out, but I try to keep in mind that I cannot be infallible.

• Resting is sacred: even if I do not feel like it or even if I am frustrated because I wanted to do something else, whenever my body screams for a pause, I will stop. Nobody deserves to mistreat their own body.

• Finding a community: when I got sick, I felt incredibly alone. I wish I found back then a community of people with the same struggles as I do, as it helps so much with the feeling of isolation. Here in Take A Pain Check there are many ways of keeping connected, from reading the blog or following TAPC's socials, to joining the Joint Rheum Chat or some of the volunteering programs.

To learn how to cope with a chronic illness is a journey. We will not have everything figured out, but we will try our best to keep on being kind with ourselves and to navigate such a difficult challenge. I hope these tips can help you on your journey!