What’s it really like to live with chronic health problems every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their experiences and tips.
Charis is a twenty-something business management student from Singapore. On Chronically Charis, she chronicles her journey with Fibromyalgia and shares how to live intentionally with chronic illness.
Tell us a little about yourself.
Hi my name is Charis! I’m from sunny Singapore and I run the blog www.chronicallycharis.com where I write about my journey with Fibromyalgia. I’m in my early twenties and I’m currently a full-time student in business management. I love food, makeup, yoga, and travel and when I’m not resting in bed you’ll find me discovering delicious(and gluten-free) food about town 🙂 If you want to follow my misadventures with chronic illness, do check out my blog and follow me on Instagram at @chronicallycharis.
When did you first get sick?
I’ve been sick pretty much half my life now! It’s scary to say it out loud but honestly, it hasn’t been that bad. I first started feeling really tired and getting fevers and aches all the time when I was about 14/15 but my doctors just thought it was “stress” or “growing pains”. As I grew older, the symptoms started to get worse and I developed a lot of stomach problems, even necessitating a hospitalization. Much later, I discovered that my stomach problems were actually gluten and lactose intolerances, which many people with fibromyalgia have. After many trips to see specialists, a rheumatologist finally diagnosed me with fibromyalgia. It’s a diagnosis of omission (I tested negative of Rheumatoid Arthritis and Lupus which quite a few doctors suspected my disease to be at first) but to be perfectly frank, it was a huge relief to know that my disease had a name instead of thinking it was all inside my head!
In what ways does having fibromyalgia affect your daily life?
Honestly, I don’t think having fibromyalgia has stopped me from leading a meaningful life or achieving my goals! There was a period where I was really down and depressed but I realized that so much of life is beyond our control – you just have to make the most of what you’ve got! I still try to do all the things I love e.g. travel (I recently did a semester abroad in Copenhagen which was super exciting!) and through my chronic illness, I re-discovered an old passion of mine – writing!
I would say the greatest challenges are learning how to balance my energy levels and say no to people when I’m feeling sick and tired. The sucky thing is that fibromyalgia is an “invisible illness” so the people around me aren’t always aware that I’m sick. It can be uncomfortable to bring it up but over the years I’ve discovered that people are actually really understanding and most of them just really just had no clue about what I was going through. All the more we need to be more open about our illnesses!
Also, the brain fog that comes with fibromyalgia makes school pretty challenging but I’m grateful for the opportunity to continue my education as that has always been a priority for me!
How do you handle everyday practical problems?
My number one tip is to be open to others and ask for help when you need it! I wrote a post about how vulnerability helped me to get through a bad phase which you can read here.
In terms of chores, I live with my family and I try to help with simple things such as cleaning my room and tidying up after myself but my family knows about my condition and they try to help me as best as they can. On the really really bad days, my mum usually helps me with what I need which I am super duper grateful for.
Since I don’t really have much energy, I tend to buy things online instead of going to the store. I’d like to think of myself as an environmentalist so I always ask the sellers to use recycled packaging and minimize plastic if possible!
If you have a chronic illness and are struggling to cope with schoolwork, my advice is to let your teachers know! If your school has counseling services, it’s a good idea to speak to them too. I was really lucky that my university had a good counselor and I spoke with him about my struggles. My university offered to consider me for disability and though I turned them down for personal reasons, it was nice to know I had that option.
I believe education is important but your health should come first! If you are not up to it, consider taking a reduced workload or even a semester off school. There’s no shame in that. I’m currently taking a reduced course load as compared to my peers but I’m really happy that I have enough downtime to rest and relax.
One last tip is to always schedule some self-care time. Self-care doesn’t happen by accident, it has to be planned. I try to block off some time in the evening where I just chill with some face-masks and Netflix (I’m currently watching Mad Men at the moment and I love it!). Self-care is so essential to mental health and I cannot stress it enough!
Do you have any tips on coping with symptoms? Is there anything you can do to prevent relapses?
In my experience, I feel that diet and getting sufficient sleep plays a big part in the intensity of my flares. I try not to eat processed food and sleep early though I am guilty of cheating on both. But you know what? That’s ok. Practicing self-forgiveness with chronic illness is really important because a lot of the people with chronic illness I know can be really hard on themselves. Don’t forget that stress is also another really big trigger for fibromyalgia flares. I remember my doctor said to me once “you have to do everything in your power to reduce your stress levels” and I think that advice is apt. Maybe for you it’s yoga or reading or spending time with your family, but try to schedule at least one relaxing activity a day to keep your cortisol levels low.
I think having the right doctor also plays a big part but I understand this is hard because every country has different healthcare systems and the support offered to fibromyalgia patients is often very limited because doctors don’t really understand it that well. Hence I think self-care and knowing your triggers are really important.
Being chronically ill comes with a lot of psychological challenges. How do you deal with the emotional and social side of having fibromyalgia?
The social side of fibromyalgia can be really difficult to deal with at times. When it comes to making plans with friends, I try my best to keep them but when I feel that I really can’t, I’m honest with them and let them know. I don’t think it’s a good idea to tax yourself because it will only make the flare worse.
I’m an anxious person by nature and I tend to worry a lot! To combat this, I practice mindfulness and focus on living in the present moment. I also find writing very cathartic as it is often hard to share what I’m going through with family and friends simply because many of them can’t really relate to my experience with chronic illness. Being able to connect with a community of spoonies through social media has been really wonderful! Other than my blog, I also write in my journal and make gratitude lists daily.
Keeping a positive attitude is also really important. There’s this quote by Seneca that goes “The wise person will endure that (struggling with difficult circumstances), but won’t choose it – choosing to be at peace, rather than at war.” I know I can’t cure myself of my chronic illness, but I can choose to accept it and be at peace with it rather than complaining about it daily.
How do you keep joy in your life on a day-to-day basis?
Writing gratitude lists! They keep me grounded and remind me to be appreciative of what I already have in my life instead of wishing for more. I think surrounding yourself with things that spark joy also help a lot. I’m a big fan of Marie Kondo and the KonMari method and recently decluttered my space which has brought me a lot of inner peace and mental clarity 😊
What would you like to tell others who are diagnosed with fibromyalgia?
Don’t lose hope! Fibromyalgia is a really sucky disease but at the end of the day, you are so much more than your disease! It’s a bit cliched, but try to think of the positives instead of dwelling on the negatives. I wrote a post about finding beauty in the midst of pain which I hope you will find helpful if you are going through a bad time. At my worst point, I was in the hospital and I wasn’t sure if I could continue my studies at all. I thought my life was over. But it wasn’t! Here I am after many years still going strong and almost done with my studies!
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