Writing about an illness is very difficult. It is especially difficult when you are writing about a chronic illness that is not life-threatening. But over the next couple of posts I will try to do just that. I have so much to say and so much to understand and come to terms with. For myself. So yes, it’s difficult, it’s daunting, it’s extremely personal, but I do want to talk about it and so I will. It’s probably easier keeping a journal but see that’s the bloody point. I cannot hold a pen/pencil with any ease anymore. So you must suffer with me.
Then again, that’s the other tricky part – why would you read it? There is a saying in Kannada that translates to ‘Who will cry for those who die every day?’
People with chronic illnesses do die a little every day. And people rarely cry for them.
Every day brings a realization about one’s own limitation. If you couldn’t go to work, then that’s a problem. If you went to work but were so exhausted by the end of it that you turned down a meet-up with your friends, that’s another issue. Or if you are just so exhausted with the business of going on with your life that you take out all that frustration and exhaustion on the people closest to you, then that is simply depressing.
Since the pain is physical, few people can actually relate to it. But since it is pain, it will also affect your mind and the way you think.
Three years ago, I was a different person. I was shiny. I was happy. I was embarrassingly optimistic. I knew for a fact that there was nothing in this world that I could not do. Except for may be adventure sports.
I know that’s true even now. But it comes with a disclaimer. I can still conquer the world, provided I’m not in pain the day I set out to conquer it.
And that’s a depressing thought. And when you are depressed, your pain will increase ten-fold.
To add to all this, in our beautiful world we have more quacks (even if they do have a medical degree) than doctors. And if your diseases are auto-immune like mine, then God help you. Because there are very few doctors who are qualified to even diagnose it correctly.
Around seven years ago, I first noticed a weird discolouration on my right shoulder. It was paler than my skin and was surrounded by a purplish rim. It didn’t hurt. It didn’t burn. It didn’t itch. It was sensitive to neither heat nor cold. It didn’t bother me at all except in the sense that it looked strange.
This happened around the time my first lover and I parted ways. My best friend Anu and I didn’t speak to each other properly for months. Another friend who was very close to me chose to become bitchy and mean around the same time. All this hurt. I even cried. But I was too busy to notice that I was stressed. I was studying for my Masters and training corporates at night and on weekends. I barely had any time to register heart-ache. I also had a baby to distract me. My niece was born around the same time. And I absolutely doted on her. When I wasn’t training or studying, I’d be in my Aunt’s house playing with the baby or just watching her sleep.
Finally after my cousin and the baby flew to Singapore where they live, I went to a fairly renowned hospital in Indiranagar – Chinmaya Mission Hospital – and met a skin specialist there. She took one look at it and said, ‘Do you know what it is?’ I waited for her answer. She said, ‘I have never seen anything like this before. Tell you what, just wait, and may be it will go away.’
I actually paid for this diagnosis.
But I did follow her advice and waited. After around six months, a similar spot began on my stomach. I ignored it and got on with my life. By then I was a part-time lecturer in a college teaching Phonetics and other English papers. And working as a nearly full-time freelance trainer in different parts of Bangalore. And I did all my travelling on my bike. There wasn’t a moment to rest. Some discolouration? Who cared?
When I finally had enough money around three years ago, I went to a doctor who came highly recommended by my friend Anu. By then Anu and I were back in love again. In her posh, spa-like clinic, the doctor ran a couple of tests and told me all about what it was not. She then suggested I go in for a biopsy. Naturally, the very word scared me. And I continued to wait.
Finally a couple of months ago, a skin specialist recommended by my family doctor took one look at it and said, ‘Why, this is Morphea and it is healing.’ She asked me not to worry about it. And since I anyway had a tattoo, she suggested I tattoo over it as well to just cover the area if it bothered me so much.
And so my Morphea was diagnosed nearly seven years after I first got it. Ironically, the first auto-immune disorder I was blessed with was the last one to be diagnosed.
What is an auto-immune disorder?
An auto-immune disorder is when the body actually attacks its own cells. The immune system mistakes some part of the body as a pathogen or an enemy and attacks it. Common symptoms of auto-immune disorders include but are not restricted to:
- Anxiety or depression
- Blood sugar changes
- Digestive or gastrointestinal problems
- Elevated fever and high body temperature
- Extreme sensitivity to cold in the hands and feet
- Infertility or reduced sex drive (low libido)
- Low or high blood pressure
- Weakness and stiffness in muscles and joints
- Weight Changes
What does Morphea do?
- It makes your skin look ugly in spite of having a purple rim.
- It is localized scleroderma – a chronic systemic autoimmune disease (primarily of the skin) characterized by fibrosis (or hardening), vascular alterations, and autoantibodies.
- It is a thickening and hardening of the skin and subcutaneous tissues from excessive collagen deposition.
Because music can soothe and all that, I give you Edith Piaf singing happily and romantically about Life in Pink.