Another image of friends out socializing pops up as I log onto social media. Longing fills my soul. It has moved way beyond FOMO. I no longer have that fear I am missing out. There is no doubt about it. I have long accepted it. I am missing out.

I’m four years into a disease (chronic fatigue syndrome/myalgic encephalomyelitis) that has taken so much from my life and I no longer anticipate the invites. At times, I no longer expect to be thought of or considered to be much more than my disease. My life has been categorized and contained. I am the friend/colleague/family member with the chronic illness. The stereotypical view of my life as it now exists has been formed, and that is the view that remains day in and day out.

Yet, my life with a chronic illness is nowhere near stereotypical. My capacities and my abilities vary day to day, month to month, and year to year. What you saw of me while I was trying to maintain a job and live independently is a completely different me than what you may see now. Last month I struggled with balancing life amidst welfare agency work expectations, the month before was spent fine-tuning a new medication that made me sleepy all the time, this month it is a working on increasing my exercise, while trying to figure out why I have this random abdominal pain. Each month has looked completely different. Each month there is a new set of challenges, a new set of symptoms or a new set of physical, emotional and cognitive capabilities.

What I couldn’t do three years ago, I can do now. What I struggled with last week is now a different battle this week. What you saw in a bad month or a day isn’t the whole story.

Continue reading this on The Mighty.

Three years since I left my GP's office, clutching an info sheet about this mysterious disease. The prognosis on that paper listed as 2-10 years. A disease I had only ever heard about being this random tiredness disease that had people falling asleep all over the place. Going into that appointment, I had thought it was what I had, well, according to Dr Google and chatting with those around me...nothing else I could find made the symptoms add up. Yet, it was still a shock, it was followed by a time of ignoring and denial (which even now still rears its head), and a lot of tears (which still make there way in!), and there was peace in finally having an answer.

This week is also May 12th...international awareness day for a host of chronic and debilitating diseases including Chronic Fatigue Syndrome and Fibromyalgia. (It is also International Nurses Day...so a shout out to all those awesome nurses who don't get enough pay, sick leave or recognition of the awesome work that they do!). 

So I thought it a suitable time to reflect a little... a little about what I have learnt...and what I am still to learn.

The past 3 years (and the torturous 9 months leading up to diagnosis) have been long...yet fast as well. I have been challenged beyond comprehension. I have felt my world that I had built around me crumble down. I have been in pain I could never have imagined...day in and day out. I have cried more than ever. Yet, I have found joy in places I didn't know it could be found. I guess I had never looked there before...so many things must have been clouding my vision.

I have learnt so much about the chronic illness community...about countless, countless individuals struggling along silently. Lacking support, lacking understanding, isolated, lonely, misrepresented, broken, and invisible. It is only when you delve in that you can see these people. Men and women struck down in the prime of their life with diseases that have ravaged the lives they once knew. United in the struggle. United in the pain. An invisible community lurking (not in any sinister way!) within our community. A sub world. Yet, a world full of hope. A world full of individuals not defined by their illnesses, but seeking joy in the little things. Celebrating the small and large milestones together.

I have learnt so much about this disease. A disease where they really still don't know what caused it, they have no idea how to cure it, and have only come across a handful of strategies to manage it. A disease with little to no research funding. Yet, is quite widespread. A disease that is grossly misunderstood by the public, health professionals, government agencies and even the doctors treating it. There is little support available, and what supports are in place for others suffering from illnesses or disabilities don't match the specific disabling conditions of this disease. I have been privileged to be able to share what I have learnt with so many around me. I am thankful for those who have been educated alongside with me and have come along on this journey.

I have learnt that I can be a voice within and for this community. And for that I am thankful...and excited for whatever doors continue to be thrown open in front of me. I came into this period of life not a writer...still scarred from my high school English experiences...yet, God has paved the way for me to be able to share this life. That is a blessing and a joy.

I have learnt so much about me. About the priorities I had in my life. About where I placed my identity. It is only when your identity in your health, or your wealth, or your career, or your social life come crashing down around you that you realise how much you idolised each of these...and found your identity in each of these, above God. It has been a humbling experience. I have learnt to depend on others, to give up the control that I hold so dearly, and allow others to care for me. Independent old me still struggles with this, but I am learning to let go and let others in. I am learning how to trust God in ALL and for ALL seasons of my life.

I have learnt so much about others. I have learnt what it means to be a true friend. I have learnt how to care for others around me who are struggling and in pain. I have learnt how to bless others in ways I would never had thought of. There have been tears...but also many laughs and so many quality moments. All because those around me have cared for and blessed me abundantly.

I have learnt so much about God. He is consistent. He is comfort. He is hope. He is an anchor in this storm. He is my rock. I don't need to come to him with my actions, or my successes. He takes me as I am. He created me. He holds me. All my imperfections are washed away. He takes joy in me, who I am, all of me.

I have learnt so much about joy. And continue to do so. Joy can be hard to find. Yet, I have learnt that it exists independent of my circumstances. This verse... Psalm 51:12 "Restore to me the joy of your salvation and grant me a willing spirit, to sustain me." spoke to me this week. Three years of this disease is a long time. I don't know if it will be three more days or thirty three more years ahead of me doing life with Chronic Fatigue Syndrome. So, my prayer for this week, is that the Lord will continue to help me find the joy. Even when it seems clouded by life and pain. And that He will be my sustenance on this journey, no matter what is ahead.

I'm praying that it may be a "Joyful Diagnoversary to me!".

And there will be cake...as all important milestones require!

This past couple of weeks I have been sick. Not the usual 'I have a chronic illness' type of sick, but unwell on top of that unwell. You could say I had a case of 'normal' people sickness.

It starts with your body doing something strange that isn't on your typical list of symptoms. For me it was lower right sided abdominal pain, in a place, and with an intensity I had never experienced before. Your brain instantly starts weighing up whether you are imagining it, what could have caused it, whether it is an extension of another symptom, whether you ate the wrong thing the day before, whether you could have overdone it...

This mental battle continues...maybe it's not as bad as I think? Maybe it will disappear by itself? Dr Google provides no help...all his advice say it's a medical emergency, and you should go immediately to the hospital. But what if it is just my body? 

A few hours later...

The pain continues. The pain is bad. Hmmm...maybe I should do something about this? This isn't quite normal, even for the stuffed up body of mine.

And that is where I stand this week...still in pain, still without a diagnosis, one CT scan, two hospital visits, three doctor appointments, multiple blood, urine and ultrasounds later, and a plethora of medical opinions. We still don't know. The medical mystery that I am! And so, you wait, and trust, and work at being thankful that you have a God who carries you, has a plan for you, and knows you and your currently rather defunct body intimately. To whom you are not a medical mystery!!

And for those who were wondering...yes, my appendix is still there...well, apparently so, they have only caught a glimpse of it on the CT. 

Dear Doctor,

I am sorry that I had so high expectations. An expectation that maybe this time things would be different, that you would understand my disease that consumes my body. That just maybe you would just get it. That you would take my concerns seriously.

Dear Doctor,

I am sorry that I did not look unwell enough to be in that much pain. That my appearance and demeanor did not fit the profile of someone in chronic pain. That I am still trying to live my life to the fullest, that I am battling each day to keep moving forward, that it hasn't defeated me yet.


Dear Doctor,

I am sorry that I took up your time. Time that you made abundantly clear was running short even though you acknowledged you were running late because you had to touch base with your secretary before you went on holidays next week. Time that you could have crammed another patient in, earned another $450 for that holiday.


Dear Doctor,

I am sorry I didn't agree with the way you labeled and considered my disease. This disease is a complex beast...but at least some basic understanding of how a body functions with this disease should be a medical school requirement. This disease is not unusual. It is not rare.


Dear Doctor,

I am sorry that I have tried that medication, that therapy, and that approach. I am not saying I have the answers...that is why I was there...but I have lived with this body for 34 years...and I have tried many things.


Dear Doctor,

I am sorry that I needed to ask the money questions. About how much would that option would leave me financially out of pocket and about whether the medications were subsidised. Being a professional patient living on welfare is a very hard balancing act of finances.


Dear Doctor,

I am sorry that I needed to see you today. Seeing a specialist like you is not something I approach lightly. Seeing a specialist in your field was because I was at my wit's end, and there are times when I acknowledge that I am not coping with the pain. Seeing you today was because I can live with pain daily, I've proved that for everyday so far that I have got through, but even tough people who spend their life downplaying their pain need help too.


Dear Doctor,

I am sorry that I cried. As yet again my voice didn't get heard. And yet again I was walking away without answers.


Dear Doctor,

I am sorry that I placed so much hope in today. Yet, I am so thankful that my ultimate hope does not rest in finding answers today. That I have an eternal hope of tomorrow...where there ultimately will be no more crying and no more pain. I am so thankful for that reminder today.


Yours sincerely,

Your 1.30pm patient.




NB- This is based on one appointment, with one specialist, focusing on one particular thing my body is doing...I do have some very lovely and excellent doctors and health professionals I am working with who I am very thankful for!