How to Live a Joy-Filled Life with Chronic Illness

“Living with chronic illness isn’t a life half-lived; it’s an opportunity to redefine what it means to be truly alive, resilient, and whole.” ~Christopher Reynolds

I have spent the past eleven years of my life in chronic pain. While this journey has been long, excruciatingly difficult, and deeply lonely, I am beginning to come to peace with my body. After seven long years of intense physical pain, anxiety, and depression, my mindset shifted.

Ironically, this shift began the moment that I got a diagnosis. In February 2020, I was diagnosed with Ehlers-Danlos syndrome. After seven years, I stopped searching and started living. That day, I did not leave the hospital crying with sadness. I left crying with relief.

While chronic pain is something that I still live with daily, my head no longer spirals into depression as I google the worst-case scenarios.

I simply spend my time choosing how I want to live.

If you are struggling with chronic pain, I hope this post offers a source of hope. As someone who has lived, breathed, and experienced the physical, mental, and spiritual pain of chronic illness, I know it hurts. And it doesn’t just hurt us. It hurts those we love.

While my day-to-day experience is still pretty rough, I experience more joy than ever before.

Here is my chronic health story. I hope it inspires yours.

My Experience of Chronic Health Conditions

As a teenager, I experienced pain in my knees, hips, and shoulders.

I was taken to a physiotherapist and told something was wrong, but they weren’t quite sure what. So I told myself they were growing pains and continued with my life.

At age nineteen, I returned home from a year abroad in Thailand, and my whole world fell apart.

It began with intense gut symptoms, huge amounts of bloating, and severe stomach pain.

I had the usual food intolerance and stool tests, but again, doctors found nothing.

Around six months later, the gut symptoms persisted, and a debilitating sense of fatigue began to hit. Every morning, I woke up feeling hungover and as if I had been hit by a bus.

My body started experiencing some pretty crazy, unexplainable symptoms; my skin would go through weeks of being intensely itchy, with no rash or raised bumps in sight. My heart started racing whenever I stood, and an off-balance vertigo feeling became the norm.

My ears started ringing, I became incredibly sensitive to noise and light, and my eyes stopped making water—itching and burning on a daily basis. I had no idea what was going on.

For the next three years, I walked through life feeling like shit.

I was exhausted by lunchtime and had to sleep in my car on my lunch breaks just to get through the day at work. I returned to the doctors time and time again, only to be given omeprazole and told these were all symptoms of anxiety.

Fast-forward three years, in a state of absolute despair, I ordered a private stool test.

In a matter of days, I found out that I had, in fact, had a parasite called Blastocystis hominis—a type of algae/water mold—that had most likely been in my system for years since returning from Thailand. I cried and cried, thinking I had finally found the answer.

This answer was hope that I could heal.

At this point, I was on a nine-month waiting list to see a gastroenterologist.

So I started my own healing path with an extremely strict parasite-cleansing diet, accompanied by antimicrobial herb protocols. After two and a half years of seeing multiple doctors, naturopaths, and nutritionists, combining antibiotics with herbal medicine, and doing an intense parasite cleanse retreat, I finally cleared the parasite out of my system.

However, it was at this point that I really began to lose my mental health.

After two and a half years of eating no gluten, dairy, sugar, high-sugar fruits, or alcohol, and being insanely regimented in my day-to-day routine—barely getting through each day and missing out on the fun of my early twenties—I still felt like shit.

The parasite was gone, but all the symptoms persisted.

I lost all hope and reached an all-time low. I started to believe that I was crazy.

I thought I had just lived out the hardest few years of my life, but I was wrong.

My health continued to spiral out of control, and I was literally losing the will to live.

During this time, I was visiting doctors and hospitals every week.

I was given a myriad of diagnoses by various specialists, including:

• Chronic fatigue syndrome (M.E)
• Fibromyalgia
• SIBO (small intestinal bacterial overgrowth)
• Postural Tachycardia Syndrome
• Open stomach valve sphincter
• Meneire’s disease
• Vertigo
• Sinusitis
• TMJ disorder and chronic migraines
• Facial neuralgia
• Anxiety
• Depression
• Gastoparesis
• Papillary conjunctivitis
• Widespread inflammation in joints
• Mild scoliosis
• Low stomach acid
• Bladder problems

I was living with all of these so-called conditions and symptoms, simultaneously, every single day, with the odd ebb and flow, for seven years; it was relentless, and I would not wish it upon anyone. Little did I know that these diagnoses were simply masks of a larger issue at play.

Fast-forward two more years, and somehow, miraculously, I was guided to a support group for those with Ehlers-Danlos Syndrome.

I attended the support group, felt seen, heard, and validated for the first time in my health journey, and was given the details of a specialist in London.

The Radical Shift: Transforming Pain into Power

In February 2020, when I was twenty-four, my whole life finally made sense.

An EDS-informed rheumatologist listened to my story, assessed my symptoms, and carried out the Beighton score test. Within thirty minutes, I had answers to everything.

I was given the diagnosis of hypermobile Ehlers-Danlos syndrome, type 3—a genetic connective tissue disorder that affects collagen production within the body.

I was also educated about comorbid conditions, such as postural tachycardia syndrome and mast cell activation disorder, which explained my crazy heart rate, experience of anxiety, and the inflammation-based diagnoses that I had received up until this point in my life.

I walked out of the office with tears in my eyes and a huge smile on my face.

I had been seen, heard, and validated.

Finally, I could stop wasting my physical and mental energy constantly searching for answers.

Now, I simply had one mission in life—to figure out how to live.

How to Live a Joy-Filled Life with Chronic Pain

For years, there was no space for fun or spontaneity; it was a matter of surviving, not thriving.

I was obsessed with finding the next best specialist, trying every medication and holistic therapy under the sun, and putting everything on hold until I was ‘healed.’ I missed out on a lot in my twenties, not just because of chronic illness but also because of my mindset.

I am sure there is still more to learn on my journey; however, I hope the tips below will shed some light on the small shifts you can make when living with chronic health conditions to transform your mindset and live an incredible, joy-filled life.

1. Separate yourself from your health condition.

A few years ago, I would have introduced myself with “Hi, I’m Jadine,” and sixty seconds later I’d follow this with “I can’t because I have a chronic illness.” These days, I don’t give it a mention.

I began to realize that chronic illness was not me. By introducing myself as a chronically ill person, not only was I reinforcing this story within my own mind, but I was also robbing people of the joy of really getting to know my soul and passions.

As a relationship deepens, I share my experience; however, I consider my words carefully. Here are some empowering phrases to separate yourself from chronic illness.

• “I am chronically ill.” –> “I experience chronic health conditions.”
• “I have (condition).” –> ‘”My body experiences (condition).”
• “I can’t because I’m chronically ill.” –> “I adapt around chronic health conditions.”

These phrases support you in separating chronic illness from your identity, labeling them as an experience rather than as part of you. By labeling it as an experience, you also open yourself up to the possibility of healing. An experience can pass; if you ‘are’ something, it can’t change.

2. Focus on what you can do rather than what you can’t do.

For years, I had deep sadness around the fact that I was always missing out. I was so scared of making myself sicker and experiencing more pain that I said no to everything. And if I did say yes, I would experience extreme amounts of anxiety leading up to a ‘fun’ event.

These days, I take my pain with a pinch of salt. I go to the gym, swim, do yoga, and see my friends, and I have managed to build my working pattern up to four days per week.

Sometimes, I overdo it. And sometimes I need an afternoon in bed. But my mental health and happiness have thanked me tenfold for getting back out in the world again.

If I can’t do something, I adapt; there is nothing that you can’t do if you put your mind to it.

Phrases to use to help you focus on what you can do

• “I can’t because…” –> “I can adapt and…”
• “I’ll be too knackered to join.” –> “I’ll put it in my calendar and confirm nearer the time.”
• “I won’t be able to do that.” > “I can do it better this way.”

3. Plan things to look forward to in your day, week, and year.

This has been a huge game-changer for me. Once I stopped searching for answers and constantly trying to heal, I started planning things to look forward to again. This can be as simple as planning a relaxing trip to the sauna with a friend, going to a concert, or booking a holiday. If these goals feel too big or out of reach, start small.

Ask yourself: If I could do one thing today that would make me smile, what would it be?

4. Set yourself goals, personally and professionally.

Just because you experience chronic health conditions or a disability that causes chronic pain, it doesn’t mean that you have to put your mental goals on pause.

In 2020, I could barely walk a mile.

In 2022, I began to walk 330 miles of the Cornish Coast path.

I adapted by breaking it down into fortnightly adventures that just pushed my body to its limits without overdoing it each time. It was a hugely liberating experience, and I found myself feeling more alive, more driven, and more passionate than I had in years.

Plus, I felt a huge sense of achievement raising money for EDS Support UK.

Similarly, I spent years working low-paid jobs around twenty hours a week, thinking that because I had chronic health conditions, I would never be able to have a ‘career.’

Miraculously, I am now working four days a week for a company I love and am about to receive my third pay rise in twelve months. Set yourself goals and let yourself achieve them, even if you have to adapt or do things slightly differently from others.

5. Stop projecting into the future.

When you are given a chronic diagnosis, it’s very easy to believe that you will only get worse. In the past, I spent nights bawling my eyes out, imagining worst-case scenarios.

For years, I believed that I would be in a wheelchair by the time I was thirty. The only people I had met in real life with EDS had all ended up in this position, and through fear, this had been cemented into my brain.

Here I am approaching my thirtieth birthday, and while I admit I find it difficult to hold up my back and spine for long periods and have recently found out I have a few ribs that are now sliding out of place, I’m still standing.

I don’t know what the future holds, but I know I have the resilience to deal with whatever comes my way. Life isn’t linear, and there is no way we can know whether our bodies will remain the same, deteriorate, or miraculously heal.

Stop projecting into the future so that you can live your most joy-filled life today.

Final Thoughts: Reality Vs. Mentality

The reality is, chronic illness is not for the fainthearted.

It is for souls who came here to be pushed to their limits, to expand their capacity to sit in the darkness, build an extraordinary level of resilience, and bounce back to the light.

You can be the most resilient, positive, and determined person, yet no doubt, chronic health conditions will still take their toll on your mental health. However, living with chronic conditions is possible. While it can feel like a constant uphill battle, there is still joy to be found.

When you realize that you can either be in physical and mental pain or be in physical pain and choose better-feeling thoughts, the choice becomes obvious.

You may not be able to control the cards that you were dealt.

But you can take charge of your happiness and choose a joy-filled life.

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