How Ankylosing Spondylitis Is Like a Never-Ending Summer


It’s summer in Kolkata. The past few weeks everyone has complained about the heat. It’s quite normal to complain when the mercury goes past 40 degrees Celsius (100 degrees Fahrenheit) for months. It is breaking records daily. In the past, it rained often this time of the year with local evening thunderstorms. In the entire months of April and May (2014) there were only a few (maybe three or four) thunderstorms. In the daytime it is almost impossible to go onto the streets. Every day the temp is over 40 degrees C. However, in the streets, because of the heat radiating from the asphalt, it is almost 60 degrees C (140 degrees F). So far there is no prediction of rain from the weather department. So people are mad and everyone is complaining of the heat. The uncertainty of its duration (because of no rain prediction yet) is making them worried. They have no control over the situation for an unlimited period of time in their minds. Actually, it is a limited crisis period which will eventually go away when the rain comes to cool everything down again.

It’s the same situation I’ve been in for years. What heat is for you, pain and fatigue are for me. And I know it’s getting worse every day. But in your case the rain comes to cool everything down again. Imagine a situation of a never-ending summer where the temperature is rising every day. That’s the way my pain is acting inside my body. There is no prediction of rain at all – it’s been a hot summer for years now with no change of weather. Just as you go inside for the air conditioning, I take painkillers to get rid of my pain. When there’s a power cut and the A/C stops working, you can’t sleep all night. It’s the same for me but with painkillers.

Now imagine you’re experiencing the heat and complaining about it, but everybody around you is enjoying beautiful spring or autumn weather and they don’t even understand how it feels. And when you complain about the heat (like you’re doing in this summer), people will get angry with you because they think you’re complaining unnecessarily and the weather is absolutely perfect for them. But with your summer, with your heat and burn (and, in my case, with my pain and fatigue), everything is so very real.

That’s exactly how I feel. I can’t stop thinking about it because every moment of my life is spent in pain. And it’s very normal that I’m talking about it. Remember how you feel when you’ve had a high fever or a serious injury for weeks? How you think about it all the time? It’s just the same for me. I’ve been sick for years. I just can’t take it out of my brain. It’s impossible for me to do so. And I want people to understand why I complain about it all the time. If you’re tired of listening to my complaints, just think about how I feel, having experienced this for years. No monsoon, no autumn, no winter, no spring…just a never-ending summer that will continue for the rest of my life.

We want to hear your story. Become a Mighty contributor here.

TOPICS
JOIN THE CONVERSATION

Related to Ankylosing Spondylitis

woman's hand over a curtain on a window looking out over the street

The Isolation of Living With a Chronic Condition

Living with a chronic condition paired with depression and anxiety is like living in a room with no door – only a window to see the outside world. We are shut off and isolated from the moment we are diagnosed. People become weary of asking how we are for fear of us giving a truthful answer, not [...]
Red heart of red wool yarn on a wooden background

An 'Expression of Gratitude' Toward the Partner Who Stands by Me and My Chronic Pain

So it’s February, popularly observed as the month of love. While The Mighty community readers surround themselves with love and support, I’d like to make a special mention of my better half. As a person with chronic pain and bouts of woefulness, I have realized the best antidote to my pain is a supportive partner. [...]

What Jigsaw Puzzles Teach Me About Life With Chronic Back Pain

Imagine your life as a jigsaw puzzle… The information on the puzzle box is incredibly limited. It does not tell you how many pieces are inside. The photo on the outside of the box is just blue sky, scattered with soft-focused clouds. As you look at the photo on the box, you mutter, “This is [...]
woman in silhouette looking at orange sunset

Why I’m Giving Up the Illusion That I Have Control Over My Disease

Since being diagnosed with ankylosing spondylitis (AS), an inflammatory arthritis that attacks my spinal and peripheral joints, I have spent the better part of two years trying with all my energy to control my disease. Once I heard my rheumatologist utter the words, “incurable autoimmune disease,” I shed a few tears right there on the [...]