About

About "A Chronic Voice" - Articulating lifelong illness through various perspectives | Featured image

An Introduction and the Aim of This Website

Hello my name is Sheryl and welcome to my blog, “A Chronic Voice”. I come from the hot and humid island of Singapore, but spent my childhood in Hong Kong. I live with multiple chronic illnesses and autoimmune disorders, primarily:

Antiphospholipid Syndrome
Lupus (SLE)
Sjögren’s Syndrome
Epilepsy
PSVT (a heart rhythm disorder)
A repaired mitral valve
Clinical depression & anxiety

My aim with this site is to raise awareness about lifelong illnesses from various perspectives. Every patient, illness and how they experience pain is different. There is no single technique or approach to managing these symptoms, but every tool in the toolbox helps. I also want to encourage empathy amongst all facets of society and not just within healthcare. Here’s one of my favourite excerpts by Luca Turin which sums it up:

“Metaphor is the currency of knowledge. I have spent my life learning incredible amounts of disparate, disconnected, obscure, useless pieces of knowledge, and they have turned out to be, almost all of them, extremely useful. Why. Because there is no such thing as disconnected facts. There is only complex structure. And both to explain complex structure to others and, perhaps more important – this is forgotten, usually – to understand them oneself, one needs better metaphors.”

Where Else You Can Find Me on the Internet:

Sick Lessons website logo
sicklessons.com

Black and Web website logo
blackandweb.com

Journey Jot website logo
journeyjot.com


For Caregivers

It isn’t always easy to articulate chronic illness, because we look fine on the outside for the most part. I would like to open a window into our thoughts, so that light may flow both ways. There are many unsung caregivers in the background who try their best to be supportive. Yet you may still feel inadequate, and struggle to understand what it is that your loved ones really need. It is my hope that you gain some useful insight, through the details of our collective experiences here.

For Medical Researchers & Doctors

It is the hope of I and many others that doctors will listen to their patients beyond the physical symptoms. Chronic illnesses tend to span across various medical departments. This makes the patient-doctor and even doctor-doctor collaboration crucial. Collective knowledge is power, and I hope that some of the experiential data here will be useful in the search for solutions.

For Myself

I find writing in itself cathartic. It forces me to pay attention, to be mindful. It also forces me to reveal my ‘weaknesses’, which is something I detest. But I want to learn how to be comfortable saying ‘I need help’, because at the end of the day, we all do. And to be truly well in every sense of the word, I have to stop denying myself of what I need.

For Those Who are Suffering

Finally, I want to let the many others who are suffering out there know that they are not alone. I hope that you take comfort through this solidarity, and find the strength to be human once more.

It is not that easy to die. (This sentence is an unspoken code for those who have suffered greatly – you know what I mean 🙂 )

Thank You and be a Part of the Community

Thank you for taking the time to be here. If you have any questions or topics you would like to discuss, feel free to let me know in the comments below. Don’t forget to sign up for our mailing list to stay in touch. You will also receive your beautiful e-book along with it!

I am also active on social media, where I share more stories, and interact with those who live with other illnesses. You can connect with me on: Twitter, Instagram, Facebook & Pinterest.

Get in touch if you’d like to:

Work with Me Contribute to the Site

You can also support my writing here. Every cup of coffee helps to keep me going! 😉

Pin It:
About "A Chronic Voice" page pin image

About "A Chronic Voice" page pin image

About "A Chronic Voice" page pin image

26 comments

  • I have followed you on Twitter and IG for a while. I love your writing and posts with quotes in them. Your words help me on bad days. I spent all day in hospital today and when I saw your pages again, I felt less alone. You’re wonderful and truly talented. Thank you.

    Gentle hugs. xx

    • Hi Samantha, thank you for warming my heart yourself, from the hospital bed, no less! I too, feel less alone now 🙂 Sending hugs and hope you escape that hospital bed soon xxx

  • Hi Sheryl im mel, i was born with eds (enhlors danlos syndrome and cms (cms = congenital myasthenia syndrome) anyways my cca coach found this website and forwarded it to me.

  • […] with very complex conditions including lupus, seizures, a dodgy heart rhythm, but to name a few. Take a trip over to her blog and find out more about her, because the main thing that struck me about Sheryl is her amazing […]

  • Hello there, Sheryl! First of all, I love your persistence to maintain this blog despite what you must go through with your illnesses! I’m glad you find writing cathartic, and a way to focus on something else other than the pain you feel now and then. 🙂
    I’m a frequent reader of your blog, which I consider a valuable resource to learn from 🙂 My partner, Jared, has both hemophilia and epilepsy and goes through a lot of challenges in his everyday life as well. Living with him, and seeing him in pain sometimes, has taught me a lot about how chronic illness affects a person, and what a person with chronic illness wants in life. Being with him has also made me reflect on myself, and my own desires from life. Nevertheless, I believe understanding the condition of a chronically ill individual is a lifelong learning process. That, along with sharing my experiences, as well as our experiences together as a couple, would be my main reason for blogging about his condition now and then.

    • Hi Cza,

      Thank you for your kind words and for taking time to read my blog, I appreciate it very much! I’m sorry to hear about your partner’s illnesses, and I’m also happy that your relationship seems to be on the right track 🙂 It does take a ton of understanding and patience when health problems are constantly wedged between a relationship. It can be very trying, yet at the same time immensely rewarding, simply because you are thrust into situations for fostering depth.

      I wish you all the best in your path, and say hi to Jared for me 😀 xx

  • Hello I’m Niamh, I’m 16, an advocate and I run an organisation. My organisation is called YoungPeople ChronicIllnesses, a few chronically ill girls share our journeys, raise awareness and tell the stories of others. This is done by capturing the good and bad times through Instagram.
    We have a project called Spoonie Spotlight where we share the stories of people with chronic illnesses. We cover peoplenof all kinds with all types of illnesses.
    I’m contacting you to ask if you’d like to share your story to help raise awareness! I personally feel like personal experiences are more powerful than facts because each persons journey with any issue is different. If you’re interested please message me back and I’ll send further details.

    • Hi Niamh, sure I’ll be happy to send you a little something! Do you have a deadline? As I may only be able to send it over sometime the beginning of next year if that’s okay with you. Thanks for doing what you do, keep it up! x

  • Great posts to read. I was recently diagnosed with APS after several clots and am still learning what I am able to do. The days of fatigue and pain do take a toll, and it was great to read through your experiences. Thank you for the words.

    • Hi Wayne,

      Thanks so much for taking the time to leave a feedback, I appreciate it! Feel free to ask about anything if you need. Also, what kind of posts would you be interested in reading about APS?

  • I just wanted to say how much I love this website and how you have organized everything so neatly and cleanly. It’s so easy to navigate, and you are such an articulate writer! Just going through a few of your posts – it is as if you are reading my mind, my experiences, my thoughts.

    What program do you use for your blog? I’m finding WordPress to be exhausting and very limiting. Just curious.

    • Hi Marlies,

      Thank you very much for taking the time to go through my blog and leave such an encouraging note. I appreciate it a lot, and am very happy that you can relate to it! 🙂

      I use WordPress too, as it’s easy for heavyweight blogs. What are the specific things about it that you find exhausting or limited by? If I can help just let me know 🙂

      • Hi Sheryl,

        I had, a few years back, my own website. I had a small business for a short while which was very profitable. My website platform was Wix.com and I got Network Solutions for the domain.

        Compared to that website, I find that WordPress is very limiting in terms of the layouts that I really want. With my own Wix platform, yes, they had templates, but you could also start from scratch. Editing and placing everything exactly where I wanted was simple. With WordPress, editing, creating new posts, trying to place the parent menus at the top, everything was like learning a new operating system or taking a computer programming class. Many headaches (literally) and flare-ups later, I finally got what I have now. I wouldn’t have gone with WordPress but it’s free and I was trying to model my site after Jenny Lawson’s “The Bloggess.”

        I’m not making any money blogging yet as I just started and I just got accepted into the Chronic Illness Bloggers group. I figured that as soon as I start making some $$ and hopefully start a new job in October (god I hope that works) I will most definitely be switching to a service I have to pay for, so that I don’t expend all my energy just trying to set up the site. It actually took me a couple of weeks to really figure everything out and get everything the way I wanted (sort of).

        I really love the way that you have set up your site and want something similar. There is a thread now on Chronic illness bloggers about switching from WordPress to other platforms. I also noticed that you have a “dot com” url and I don’t see the WordPress logo anywhere… which theme are you using? Is your site hosted by WordPress or another company? Hopefully these questions make sense.

        In fact, I was so impressed with you and your site that I wrote about it in my blog and said you should get some kind of award!

        Well this was probably too much information but these are my issues and your site is impeccable. And you’re gorgeous too.

        Sincerely,
        Marlies

        • Hi Marlies,

          I purchased a theme from themeforest.net and integrated it using the WordPress CMS on my own hosting. A few of the features are added via plugins or I modified the codes a little bit. I usually do that for new personal websites as it’s easiest 🙂

          Personally (from a professional point of view at least – I do web development) I wouldn’t recommend Wix as I I think it’s actually very limited. But whatever works best for you is how you should do it 🙂

          Thank you for all the compliments and writing a blog post about my blog…I really appreciate it! 🙂

          Cheers,
          Sheryl

  • Hi there, I would love to contribute, is there any way I can? I love your blog and have only recently accepted that I’m not going to get better. I’ve hidden my chronic illness from clients and friends, but it’s impossible to do so now, as I’m getting worse by the day. I also like to offer a little inspiration too and write for Huff Post and also the Mighty. It would be an honour to join you!

    • Hi Martina,

      Thank you so much for reaching out, I appreciate it! Would love to have you join me, was there an idea you had in mind? 🙂

  • Hi! I don’t see a way to subscribe to new posts on your main page, can you add that (or tell me where it is, if I’m missing it)? 🙂

    • Hi Kit, you can subscribe to the feed or any of the social media channels I have via the buttons on the right side bar (appears at the bottom of page on mobile).

      Here’s the direct RSS feed link if it’s easier: https://www.achronicvoice.com/feed/

      Alternatively, you can also sign up for mail subscriptions via the popup!

      P.s. Loved your blog, have your article in my to-post queue. Have a great day!

  • I am going to have to be completely honest here. I hope you will not mind.

    This blog terrifies me.

    I have just been diagnosed with lupus. Mostly the only symptoms I have been dealing with thus far are joint aches, fatigue, rashes and lack of appetite. So far pretty mild.

    In the past days however I have been reading all sorts of terrible stories about people’s experiences with lupus. Honestly I wonder if this is doing me more harm than good. I have been trying to tell myself that maybe my disease is only a mild form, that I won’t suffer this much. But would that be denial? Should I be preparing myself for the worst if it keeps me in a state of constant dread and fear, even during days when I am feeling relatively fine? Might this just impact my health and become a self-fulfilling prophecy?

    I would greatly appreciate your thoughts. Thank you.

    • Hi Sarah, of course I do not mind. I was terrified when I first discovered I was sick as well.

      My suggestion is to stop reading all these horrible stories (like mine ;)) if it’s not doing you any good. Save your brainpower for research that has to do with your symptoms specifically, and work with your doctors.

      And yes, there are many people with milder forms of Lupus as well. I suppose the ones who suffer the worst side effects are the most vocal in raising awareness online. Don’t worry too much, that stress will only do you more harm than good.

      Take it one day at a time – you will be just fine. xx

    • Hi Sarah, I hope the author doesn’t mind me commenting, here. I first have to say I’m really impressed with your honesty, and you’re really great at identifying your emotions: Please don’t underestimate what a talent that is in today’s world!

      It’s completely natural to want to prepare yourself for whatever might arise. The internet can be good for a lot of things, but it must not be abused. Using the gift of technology to hyperfocus on the negative–of anything!–is letting the survival instinct parts of our brain take the driver’s seat, and they just weren’t designed to have instant access to all their worst fears, all at once. How could you be anything BUT overwhelmed?

      Now, think back on some of the most difficult situations you’ve faced thus far in life. I’m pretty sure if anyone had tried to tell you the ways in which you’d cope, survive, heal, even thrive in spite of them, you’d have called them crazy. It’ll be the same for whatever level of illness you experience in the future–and NONE of us know what could happen to us months or years from now, or how difficult (or wonderful!) our futures could be. But if you think back to what you’ve already endured, remember that you didn’t get what you needed to cope with those situations all at once, in a sealed box at the very beginning, with an instruction manual attached. No, you got your strength exactly when you needed it; not before. That’s how the universe works (and how God works, if you believe in the Divine).

      So trust that you will always have what you need for each situation *as it arises*–but not before or after. There’s just no need for you to have to carry the baggage of all the skills you’ll need then–for health or otherwise–before you actually need them. But it will all be there when required, as it’s always been. Or you would not be here at all right now.

      Tibetan Zen master Thich Nhat Hanh says one of my favourite things: “If the present moment has peace and joy and happiness, then the future will have it also.” It reflects that our lives are collectively how we spend our moment by moment. If you highlight your anxieties and anticipatory grief (again, normal, and allowed, but not helpful or beneficial), then you can expect that’s what you’ll continue to do and that’s what your future will look like, also. You’re exactly right that some things can become a self-fulfilling prophecy

      If you’d like some help and a jumpstart on managing anxiety by staying in the moment, I highly recommend Toni Bernhard’s book “How To Be Sick,” which shows another way to live besides anticipating disaster every minute of every day. As someone who’d come to *expect* disaster, it was truly life-changing. But I trust *for you* that whatever you need at every single part of your journey, Lupus or not, will find you when you need it. I hope you’ll get there, too–it’s completely possible, and you’re off to such a great start already!

      xo Kit

      (P.S. – Also the “Calm” app has the best meditation introductions and programs that I’ve seen–7 days of learning to manage stress, or anxiety, or sleep, or self-esteem, or just regular sessions aimed at things like creativity, anger, compassion, etc, plus a new 10-minute guided session every single day, if that’s something you or anyone else reading this might want to dip their toes into. It also has an “emergency calm” session that has grounded me during some particularly rough moments.)

      • Thanks Kit for the useful reply. I hope it helps you Sarah, and also anyone who might be caught in a similar situation out there.

  • Thank you..

Join the discussion

Your email address will not be published. Required fields are marked *