Spoiler alert: This is not a hospital bashing article.
Hospitals.
The real place that taught me so much on acceptance. It taught me that I am no special snowflake. It taught me that everyone else’s lives are also important. It also taught me that if everyone is giving it a fight, why would someone else expect their fight to be more brutal than the others’?
Recently I had to go back to the hospital more frequently because of my increased lupus activities. Even for a seasoned patient I was appalled at how a slight tweak of events would add to the operational bureaucracy and difficulties patients face when they are in the hospital.
Long story short, I wanted to see the same renal specialist who works in both the public and semi-public hospital. It was a special arrangement to retain doctors by giving them grants to do post-docs so that they do not jump ship to a private hospital which compensates more generously compared to the public hospitals. My specialist only works in the private hospital one day in the week, and the rest of them he will be at the public hospital. So my thought was to see him at the public hospital. I used to have my records one year ago in the public hospital until I was discharged and transferred to the private hospital since it was more efficient to follow-up in the private hospital.
So I was thinking, it is, after all, lupus. It is a given that it might relapse. Since I already had the records there, and I could produce the latest records that I got from the private hospital, how difficult would it be for me to get referred back to the same specialist? Well I got my answer after two days running around from one clinic to another in two opposite corners of the hospital.
The reason was because I was once discharged (to a different hospital), and the administrative people would not refer me directly back to the same doctor until I have seen the general practitioner to verify my conditions. It did help that I had all the recent records to show the GP. I do applaud that doctors, in spite of functioning in a giant bureaucracy, tried their best to help reduce the patients administrative burden.
I also did my best to emphasize on certain conditions so that I do not waste my time getting referred to the wrong clinic since I have both kidney and joint inflammations. I am less concerned with the joint pains because I could still walk, and obvious symptoms can be tackled easier. Not so much on kidney involvement because you will not know until it is too late.
Then again after everything is settled, I got the medical leave and advice on medication that I needed, those reality that I have once experienced almost two years ago when I first had lupus started to sink in.
The hospital is just like another big corporation and another project that one had to learn the ropes around it. You may be inclined to think that your sickness is of utmost significance and that your world is ending. Hate to break it to you that the worst of it all would be death, and since you are still alive, it is not the most serious case. This might sound morbid but it is the reality. I have seen patients in the same ward fighting for their survival, and I admire their resilience and unrelenting spirits given their far more complicated conditions.
But after a while I just realised that life goes on no matter how strong or weak you are. Whether you have a caring family, a wealthy parent who holds the fort for you, a compassionate partner or bosses who decidingly forgetten that lupus is a long-haul disease, everything is still very much dependent on how you handle the reality. Reality is just a fleeting perception. You can decide if your world is about to end or there are other opportunities. I firmly believe that there is always a way out of something.
You can stand up and fight for yourself. It is not an uphill battle, I always believed, but there is definitely an art and skill to hone, on how to survive the place where truth is rarely shunned – the hospital. Once you accepted that hospitals is a vast facility where lives are being managed, you will accept that every else in life would be the same.
LUPUS 500 DAYS 