Reinventing my personal blog

19 Nov 2013

Living with Graves

A year and a half ago, my friends sent me to a local emergency ward in Singapore when I moved in and out of delirium in the middle of dinner. I had been unwell for a long time, but there had been no suitable diagnosis or treatment. I lost nearly 20 kilograms, had the shakes, became insomniac, and most of all, emotionally and mentally unstable. Once diagnosed, it isn’t a terribly awful disease; but the number of adjustments one has to make is astounding. Friends and loved ones too, struggle with dealing with the external impact of your disease, and will have to do so for a very long time.

To say it can have a dramatic effect on your life may not be an understatement. Nearly every Graves' patient I know personally has experienced one or all of the above: unplanned career changes, closure or reorganization of business enterprises and any other financial responsibilities, breakdowns of relationships including marriages, and the list doesn’t stop there. Some of your partners or friends will think it is not a big deal and that you are overreacting — after all, it’s just that a tiny butterfly-shaped gland near your throat has elected to produce hormones at a different rate, right?

It could not be more wrong.

That tiny butterfly-shaped gland near your throat is also inscrutable, and controls many aspects of your life and health that you take for granted. One of the key things it affects is your mood, if untreated or treated inadequately. If you’ve always been cheerful, optimistic and bubbly, imagine becoming a different person for hours with no warning whatsoever; breaking down crying when your bus doesn’t arrive, or when your toast is burnt. If you’ve always been confident and dominant, imagine becoming daunted by small tasks you do routinely - and being confused as hell about it. If you’ve always had a superb memory to the point you’ve never had to write anything down to remember them - imagine forgetting, every single time, the door code to get into your office. Every time you go to the bathroom you get locked out from work because your brain just isn’t keeping pace with your body.

Scariest of all: nothing else seems to matter. The business you’ve built for years. The career you’ve devoted your life to. The partner you’ve made plans for life with. It’s so necessary to walk away from all of that, when you aren’t yourself. It’s tempting to think about leaving everything and everyone because nothing’s working anymore and you want no part of it. It’s easier to quit. Which is also weird, especially if you’ve never been a quitter.

I tried, and still try, to lead a normal life. I take my meds everyday, but am constantly thinking about what more I can do. Should I drink radioactive iodine? Remove my thyroid gland completely? I don’t particularly want to do either especially since neither of them have a sure shot or even a good shot at curing me, and may potentially work out even worse. I want to eat my meds daily and eventually come to a point when I don’t need them anymore. Most days, a year and a half on, I’m back to being myself - by that meaning a completely different person from when I got diagnosed. A different person from the one that made bad decisions because I did not know the extent of my disease or what it does to me, when I did not know I had the disease at all. Now that I know how it affects my cognitive processes, my emotional lability, my physical body when the symptoms return when in remission - I try not to notice. Most days, I succeed. Yet it never feels like it’s enough.

We still haven’t gotten it right. The meds work and then they don’t. My body, through no input from me, suddenly decides it loves making my heart jump out of my chest when all I’m doing is sitting in a car. My mind decides it wants to react in entirely unwarranted ways: I’m the life of a party one mind and the next moment I can’t even hold a conversation with anyone.

I’m seeking all the best medical help I can get but it’s still an incurable disease that affects everyone differently and in different ways at every stage in your life. I don’t know if I’ll ever be done: all I can do is manage my expectations, and other people’s. I know my limits: if I can’t work, socialize or be normal, I have to make sure people know it isn’t me, it’s just this dumb disease. Sometimes I don’t even know who I am or what’s happening. I’ve come close enough to get to a point where my levels are supposed to be normal, normal enough to get off the meds completely to see what happens next. But even before we can try that, I’m relapsing - like a damned yo yo - and I have no idea what will happen next. It’s a dumb disease.

Just some dumb disease I’ll have forever.