Living, Not Just Surviving With A Disease

Have you ever felt pain? And I don’t mean the kind where your heart is broken (figuratively). I mean when you wake up in the morning and every part of you is screaming. It’s intense, you can’t move. You can’t distinguish the pain emanating from different parts of your body. All you can do is cry or scream and remember to breathe. Ok, that was dark, but I have experienced this pain. Twice. It’s not fun. Contrary to what the masochists say, physical pain is no pleasure.

I have psoriasis. It’s a genetic chronic autoimmune condition. It usually shows up as scaly patches on the skin but sometimes (believe my bad luck here) it causes inflammation and pain in the joints. Any joint, anytime. I didn’t even know the human body had so many joints till they all started hurting. Here is where the whining stops. If this disease has caused me insane pain, it has also done something else.

I have stopped obsessing over the future. When you don’t know what condition, you will wake up in, you live the day. The mayfly approach to life. We are so hung up on 5 years from now that we waste what is given today. I don’t know about 5 years from now and I don’t care. I care about today, doing my best today. Work for the future, yes, but don’t lose your mind over it every day.

When the symptoms began to show I hid it from my friends and family. I feared to be a burden on them. They would worry too much. Bad idea.

But no one should go through illness alone, whether mental or physical. On one of those days where I was immobilized, I called a friend over. She tried everything – cold water, massages, hot water but what helped me the most was her company. Just us talking normally, and that day I suffered less.

These times also show you who your people are. Someone might be extra friendly but distant when you need help. Others might genuinely care for you, but they don’t know how to help you. That’s ok. Not everyone can be relied upon. With others, you never have to ask. They are the first to turn up and take care of you, even if they barely talk to you. And lastly someone might not know anything about your troubles, but they heal you for some time. I am content knowing whom I can turn to.

Thirdly, take your damn medicines.

One of my friends, Jai, is a doctor (an orthopaedic surgeon no less). I couldn’t hide it from him. He asked me to immediately start taking painkillers. I was reluctant because of big pharma, addiction and efficacy. He said to me plain and simple, “There is bravery and there is stupidity. There is no bravery in suffering when you can do something about it.”

Photo: bostonglobe.com

Now I have learnt to take them as I need them. There is no cure for this. If someone claims to have found a cure, be assured they are a quack. Medication exists for the symptoms. They come with a lot of side effects and they don’t work for everyone. In fact, they might worsen the person’s health. But I am taking them. If only to be able to say this, “That I did everything I could”. That in life too, there might not be a solution but it doesn’t mean that you stop trying or accept such a status quo.

That no pain is too trivial. No pain is unbearable. I visited an acquaintance who had had cancer surgery and was bedridden, but she spoke to me about my health. I told her that her condition was serious, so we shouldn’t discuss mine. She said you can’t compare suffering like that, “Yours is as real for you as mine is for me.” My flatmate did the same for me. She has terrible menstrual cramps, but she stopped telling me about it. She said you go through worse every day. There is no scale for whose pain is worse. All we can do is deal with our own and empathize with others.

For the second part, sometimes people tell me that I am a warrior. I am no warrior. I have good days and bad days. I am not glad to have this opportunity to be stronger. I never asked for it. It happened, and I am getting by each day as it comes, with a little help from my friends.

Preview Photo: wayofninja.com

Radha
Radha

Radha is a lawyer and preparing for civil services. She is a feminist (no that's not a bad word), environmentalist and potterhead. She loves superheroes but is an agnostic/ atheist.

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