In 2013, I contracted a virus that I thought was the flu. It ended up being dengue, sometimes referred to as “breakbone fever”. The nickname is a reference to the levels of pain some people experience when they are in dengue’s throes. I expected my symptoms to subside once the active infection went away. After all, friends who contracted dengue, sometimes multiple years in a row, seemed to return to a sense of normalcy. Instead, the joint pain remained, below the fever pitch of “breaking bones” but nowhere near my old self. For a long time I waited for that “old self” to materialize, and for the pain to recede. It took three years to finally surrender to my present and admit that the pain wasn’t going anywhere.

Pain, fatigue and my new normal

“Pain is a message to the mind that something is wrong,” Anna Altman wrote in a devastating piece about managing her own pain and migraines. “To this day I guard a hidden hope that I will receive a new diagnosis, one that clearly explains the severity of my symptoms.”

Like Anna, I don’t have a definitive answer about what to call the aggregate of pain that has taken up residence. However, I do have an idea of how it got there.

The scene of the “crime”: Saigon, where I got dengue fever.

I got dengue in Vietnam, while already having celiac disease. It hung out, and wreaked further havoc on my immune system. Doctors have offered up that the dengue triggered post-viral fatigue, which may or may not go away. It also gifted me with Raynaud’s disease, a disorder of the small blood vessels that reduces blood flow.

When exposed to cold, my blood vessels go into spasms, which causes pain, numbness, aching and tingling. When I touch cold food or I am in cold weather, my hands and feet turn white, then blue. I tried making meatballs this summer, but had to stop because touching the ground meat was so painful that I stood in the kitchen in tears.

To add to the list, I seem to have lost my fingerprints. I found this out when applying for a visa. After placing my hands on the digital fingerprint reader, all of my fingers had giant red Xs on them. “Oh!” said the man reading the scans. “You have no fingerprints!” Excuse me? I found a 1970 study noting that some celiacs have fingerprint atrophy, but mine were definitely intact pre-dengue. A mystery. Jokes about my going out and robbing banks abound, don’t worry.

And finally, the most debilitating thing after the joint pain itself has been the fatigue. A deep, never-ending bone weariness that makes simple things seem like obstacles. And a restless sleep that does not provide respite from the haze of exhaustion.

The combination of chronic pain, circulation issues and fatigue combined to compress my resilience and made it difficult to see the forest through the trees. Emotionally, it felt like small disagreements loomed large. I found myself more reactive than before, taking things more personally.

Instead of facing my days with resolve, I started curling into myself, warding off intrusions that might make things hurt more. I started fearing the next shoe that could drop, and wondering if I would be able to cope. Anxiety can be magnificently destructive, but when combined with chronic pain it becomes paralyzing. Worrying about whether you can withstand more pain is a valid concern. But as I eventually figured out, it only serves to make things worse.

In his book Full Catastrophe Living, Jon Kabat-Zinn notes:

If you have a chronic illness or a disability that prevents you from doing what you used to be able to do, whole areas of control may go up in smoke. And if your condition causes you physical pain that has not responded well to medical treatment, the distress you might be feeling can be compounded by emotional turmoil caused by knowing that your condition seems to be beyond even your doctor’s control.

My distress was compounded by the fact that I looked healthy, even though I was in pain all of the time. “You seem great!” friends would say, glimpsing a photo on Facebook. Some would tell me to take supplements, or to just “think positive” about the pain and live my life as I used to. They meant well, of course. But the comments reveal a dismissiveness about longer-term pain that other friends with “invisible illnesses” struggle with also. It’s as if people expected us to will it away. If only we had thought about being more positive! How silly of us.

The Spoon Theory explains the effects of invisible pain with very effective imagery. You only have a certain amount of “spoons” in a day, and you use them to do things that most people don’t think twice about. Because for you, being in constant pain, even simple things require spoons. So everything you do, every decision you make about undertaking activities, it comes with the knowledge that there’s a spoon-like opportunity cost. And if you use up all your spoons that day, that’s it. You can’t do anything but rest, since you are so depleted.

The problem is that for most people, pain is temporary. When it becomes a full-time roommate, the things that used to help – going to the gym to work through it, climbing a mountain and communing with nature, going to a concert – become threats instead of pleasurable experiences. And for many, that kind of sustained bracing is beyond contemplation.

No matter the challenges in my life, be it someone who bet me I couldn’t get into law school or the other illnesses on my travels, I have always found a way around. This time felt different, because the pain was ongoing and frustratingly opaque.

The Portuguese have a word I love, saudade. NPR defines it as follows:

A melancholy nostalgia for something that perhaps has not even happened. It often carries an assurance that this thing you feel nostalgic for will never happen again.

This word, untranslatable in English, is what I have struggled against these last years. A wistful longing for something that may never return. After so long, seeking an answer to “fix” the pain was not helping. I only turned toward healing once I forced that deep, destructive nostalgia out of my mind.

Turning things around

In her long, thoughtful piece about her daughter Carmen’s MS journey, Maria Bustillos interviewed a doctor named George Jelinek. Dr Jelinek referred to the difference between “healing” and “curing”, with the central message that it really matters to take a more active role in the care of our own bodies. Ultimately, if you fall through the cracks of the medical system, or if you fail to receive a diagnosis that has clear, actionable treatment, you have to take some control back for your own sense of self and health.

Maria’s reaction to his philosophy was one of comfort:

Being encouraged to take care of herself made a world of difference to Carmen, and to us. We weren’t waiting around for the next bad thing to happen; we were working together in a diligent and increasingly hopeful state of mind.

In the absence of finding a solution to stop feeling pain, I found hope in being able to reframe my attitude toward the pain. This included actively cultivating a sense of self-compassion, acceptance and gratitude. These are all words that pre-travel Jodi would have taken a look at and rolled her eyes forever.

Simply accepting what is unmanageable and not trying to control what you cannot change is a marked shift from my old way of thinking. It is also directly in conflict with the way I was raised in western society. “Give up and just accept that things suck? Are you kidding?” But it is the only way that I have been able to turn things around. By focusing on my progress (or lack thereof), I was making a difficult situation more untenable. Now, I celebrate the small steps I have started to take instead of fighting for bigger goals.

Rachel, a reader of mine who contracted dengue and malaria at the same time, has struggled with issues of chronic pain and fatigue. Her journey mirrored mine, except that she was able to see a pain specialist in her home country. She and I have gone back and forth about our experiences, and our respective attempts to find joy in a life that is now different for each of us. For her, too, it has meant accepting the pain and not struggling against it. She has also actively sought out what brings her joy. “I had to try and look for joy and gratitude even when I didn’t feel it,” she wrote. “This became reflexive, and somewhat automatic.”

Like me, Rachel wasn’t brought up to seek out gratitude moment to moment. But she too found that focusing on it, even if things hurt, helped shape the outline of her healing.

How I learned to cope with chronic pain

The most important, most difficult, most fundamentally frustrating thing is this: you simply need to accept that this is your reality, and move forward from there. Even when moving forward feels like crawling on the floor, a millimeter at a time. Even when progress feels elusive, and you can’t bend your hands in the morning. The only thing you can do is care for yourself and try to find solutions that work for the body you’ve been given.

I do want to add that I have experimented with a lot of different diet-based changes, supplements and therapies. I have been tested for inflammation markers in the blood (thankfully they’re low), and thyroid disorders, and many other things. While I appreciate those telling me that I should try x and y thing that will magically fix it, with all due respect, I have tried many of those things.

The pain is here, and it may be here to stay. All I can do is carve out my own joy within it, and accept that it is now a part of who I am.

1. Daily meditation: I meditate both morning and night, and while there are times where I feel resistant to the practice, I cannot deny that it makes a big difference. Meditation has helped accepting what my body is feeling moment to moment, and also reduced reactivity in other areas of my life.

2. Read. I read three very helpful books for stress and pain management. The following books are three of the dozens and dozens that I have read in the realm of pain management, stress, self-help and more. They are books that I will return to, because they tackle the precise tool that has helped turn things around: my attitude toward the pain. I highly recommend all three, and each of them were suggestions from close friends who found them comforting. I’ll be posting book summaries of these soon also.

• Full Catastrophe Living, by Jon Kabat-Zinn. As the creator of mindfulness-based stress reduction programmes, Zinn focuses on mind-body strategies derived from meditation and yoga to counteract stress, establish greater balance of body and mind, and help you get out of the rut of fearing pain.
• Self-Compassion, by Kristin Neff. Self-esteem work isn’t the fix to perfectionism, argues Neff. Accepting the present, being kind and compassionate to ourselves and still striving to do better is. The book offers exercises and questions in each chapter to help.
• When Things Fall Apart, by Pema Chodron. I picked this book up a few years ago, but wasn’t really ready to read it. Or rather, I was not yet willing to accept the pain and change my perspective about it. I was still looking for a fix. Chodron writes that when we are continually overcome by fear, anxiety and pain, the way out is to stop bracing against it and learning to stay open. Not easy, and you have to be willing to read her words without judgment, but I’ve found them very helpful.

3. I started to understand that resilience is a process. Like many overachievers, I trafficked in perfectionism for most of my life. I’ve had to let that go. Warding off imperfection doesn’t make us stronger, even if it feels like it might protect us. As with opening your heart to others, cultivating openness makes you resilient, not weaker. For chronic pain, baby steps feel like giant leaps. Progress doesn’t happen overnight.

4. Accepting what is. One of my best friends often mentions “magical thinking”, that wishful place when you “what if” something to oblivion. Magical thinking isn’t reality, it’s simply a story you are telling yourself. Instead of my fantasy that I’d wake up healthy one day, I’ve worked on accepting what is. I’m a person with significant pain problems, and I’m availing myself of tools to cope better. It is what it is. All you can do is work with the reality you are living, and for me that meant accepting that these limits are valid and I need to respect them.

5. Practicing gratitude. A friend argued that my blog is a practice of gratitude, since it shares the many wonderful things I’ve encountered and appreciated during my travels. While that’s true, it also hasn’t been enough to help me in this journey with pain. What has helped is very simple: writing down three things at the end of each day that I am grateful for, within my reality. There is science behind this practice, despite my initial skepticism. Nowadays I’m all for reminding myself of the good in my life, which is plentiful despite the pain.

6. Implement movement wherever you can. Walking when the pain is slightly better, doing restorative yoga classes (highly recommended and far more gentle than a different type of yoga class), stretching and taking stairs when they are around. Every little bit of movement counts. I’m used to it hurting when I move but I still try to move when I can.

7. Trying to find joy in this new space. As I mentioned above, the things that brought me joy were the ones that now hurt. I had to get creative with the things that were available. I started to make lists, with a hat tip to the app IFTTT – if this, then that. I made two-column sheets: if this isn’t available then I’ll do that instead. If I can’t climb a mountain, I can go for a long walk in the park. If I can’t eat chillies, I can cook a fun meal at home. And so on.

8. Morning and evening routines. These are very simple routines – not the “how I hacked my mornings and became The Most Productive Entrepreneur Ever” lists. I have found that even if it is a really painful day and I feel like it was a wash, I still feel like I accomplished something if I stick to them.

9. Diet changes. Some of what has worked for me:

• This may be common sense to the rest of humanity, but I’ve spent most of my life in a state of normalized dehydration. It’s amazing how much better I feel when I drink water. It’s as though everyone else telling me I was crazy for not drinking more of it was right.
• Cutting out caffeine except for that one (glorious) cup of coffee per day.
• Cutting out alcohol, with rare exceptions.
• Cutting down on sugar as much as possible. It’s in a lot of foods, and I do put a spoon in my coffee, but I have eliminated desserts and snacks that have sugar.
• Taking a robust probiotic daily.
• I am already celiac, so I don’t eat gluten but I have found when I do nowadays by mistake it’s far worse than it was pre-dengue. So I’m extra careful about cross-contamination. When my joints are particularly bad, I also cut out corn and nightshades.

10. Connect with others. Chronic pain has a tendency to make you feel alone and misunderstood. While it’s true that some people may not grasp the extent of it, no doubt if they are true friends they will love you all the same. Connecting to friends who accept me despite the current limitations has been really important in helping me out of my foggy isolation. I also appreciate friends and the three readers named Rachel who have been willing to share their experiences with chronic pain and immune disorders. As humans, we are wired for connecting to others and it’s times like these that we need to remind ourselves to do so.