Not A Cry for Help

It’s weird to be in a state of part-distress, part-helplessness, and part-calm now after finding out my health insurance has expired (because of course, in this system, there’s an age limit for HEALTH insurance, as if you could ever stop needing medical care). In Cebuano, I would call it “minghoy.” I don’t think there’s an exact English translation of it, but the closest would probably be bleak. It’s the feeling you get when you hear news of the death of a comrade by the hands of the state and knowing there was nothing you could’ve done. It’s also the feeling you get after you create high expectations for yourself, only to have your fears of falling short justified. It’s not exactly disappointment yet.

Being stuck in the feeling of helplessness has made me question my existence. I’ve always wondered why God (or whichever Supreme Being… maybe the universe) gave me all this love and wonder to give to the world but also gave me lupus, limiting me, as if it needed to be balanced out. 

It also sucks because there’s not exactly a cause for this, it just kind of occurs in people, so I’m stuck between blaming myself and blaming my genes. The pull is greater towards the former, however, because this is the life I’m living now and, honestly, the best thing I can do is just make the load lighter on everyone.

I’m always thinking about that, even worse now with my health insurance expired. The monthly expense for my medication is budgeted at Php 10,000. The chemotherapy session I have every 3 months is also around the same price. My monthly laboratory exams (blood tests and urine) come up to Php 5,000 to Php 10,000. If I get major tests like CT scans and ultrasounds, that’s Php 20,000 and above.

Basically, it’s expensive to be sick. I’ve been incredibly lucky to have had health insurance up at this point, because of my parents working in multinational companies. But when I first heard the news of the expiry some weeks ago, it really made me question how I’ve viewed my life until now.

Being diagnosed with lupus in the year I turned 14 really pushed me into an autopilot of the mantra “I am strong. I can get through this.” And for the longest time, I did believe that. I have incredible mental strength. I’m resilient. I was diagnosed while my family was on the verge of collapse. I started chemo in 2013. I had an accidental overdose in 2014. I almost died in 2018. The hospitalizations in between diagnosis in 2012 and now. Every month, I visit the hospital for routine tests. I have regular blood extractions even though the needle still scares the shit out of me. There is a lot of mental preparation that comes with all of this. This has been my life for the past 8 years and I’ve survived through it all. 

But I only survived through it all because we could afford it. As a teen, I had my moods sometimes and this came in the form of skipping meds, as if one tablet wasn’t the cost of two whole meals in a karinderya.

I was mentally strong and resilient because I was privileged. I still am only strong and resilient because I'm privileged. I didn't have to think of the expenses growing up. Now I do. I acknowledge that privilege. I wish I knew better before.

I don’t have that safety net anymore. The insurance plans in the Philippines for people with pre-existing conditions suck and are even more expensive to maintain so we’d actually be better off not getting any of them. They only cover hospitalizations. For my case, I have more expenses with the outpatient work—blood tests and meds. Philhealth also only covers hospitalizations and not much of it either.

I don’t mean to say it will be hard to survive. My parents can afford my treatment and I will always be grateful for it. But it just makes me wonder, to what extent? Can I forgive myself for giving them this burden for the rest of their life? Don’t they deserve better?

Can I forgive myself for subjecting my boyfriend to this life, taking care of a disabled person? There is no cure to lupus. My boyfriend hasn’t actually had to take care of me yet, like bathe me in the hospital or hold back my hair when I puke after chemo or spend for me, because I’ve been careful not to show all that to him even 3 years and 10 months into our relationship. But someday, if he sticks with me long enough, he’ll probably end up having to. I don’t think I can forgive myself for pushing that responsibility on him.

Can I forgive myself for pushing my sister into even more anxiety? She’s already anxious enough, taking on all of the world’s problems. And she lives in Vancouver. I’m miles away from her. She said she’ll always worry about me even if I don’t want her to. And my brother, too, who is kinda emotionally constipated. Can I forgive myself for allowing them to live their lives in worry for me?

I know the lupus is not my fault and it’s unfair for me to think I would be responsible for how it impacts the people who love me. But, still, wouldn’t it be nice to lighten the load a little? It would be better, even, if I could lift the load off of them entirely.

But that always leads me to very bad thoughts that I believe I shouldn’t bring into this blog in case somebody who reads it will get triggered.

I always have these bad thoughts of disappearing permanently. At least that way, it’s just all in one go? All the pain it would cause to my loved ones, they’ll grieve and get over it eventually, right?

Sunset at North Zen Villas, Doljo, Panglao, Bohol. January 30, 2020

However, on my best days, I know it’s wrong to think that way and most of the time I snap myself out of it. I pull myself out of that dark place. I remind myself I deserve to live.

Kyle (the boyfriend) always reminds me that I have to trust the people who love me that they love me for the right reasons. That they don’t regret loving me and that it’s never up to me if they do. It bugs me because it’s not as if they stand to gain anything if they do. I don’t know if it’s worth it. But, again, that’s not my call to make.

(I wish it was, though.)

The rational part of my brain does refute these bad thoughts all the time. On my best days, I’m better than this. I even see a future for myself, something that’s hard to do given the unpredictability of illness, but I see it. Nothing concrete, of course, because it’s unpredictable, but I think it’s enough to be able to hope for a future. To be able to see myself waking up the next day. It’s always been hard to do that.

But the best days come and go and, when you’re deep in the despair of the bad days, waiting for the best days to come seems fruitless.

I try not to let it get to me, though. I hope that I will keep trying.

Always,

Claire

P.S. There is so much to be done in the name of healthcare and it affects each one of us, especially now in this day and age of illness and virus. The capitalist crisis is worsening and it is leaving more and more people to die. The healthcare system in the Philippines is weak and incompetent because it is not the priority of the government. We are one hospital bill away from poverty and you really would have to be blind to still not be angry about it. We deserve better than this. We deserve free and quality healthcare for all because we all deserve to live. 

Anyone who dies of illness in the Philippines is a victim of the healthcare system. Their blood is in the hands of the neglectful state.

P.P.S. #wordvomit from a person with disability (PWD). My city has an ordinance that gives a yearly Php12,000 allowance for registered PWDs. Php1,000 per month barely makes a dent in my monthly expenses but hell if I won’t utilize this. (I still don't know how to avail it, though, because of course the processing and inquiry for it is inconvenient for actual disabled people).

There really should be an everyday reminder for the government that the lives of PWDs are also their responsibility. We are already in the margins, and if the government keeps up its policy of willful negligence, then one day, even the margins will be erased.