On living with chronic pain

On living with chronic pain

I can tell you the first thing about what it’s like to live life as a stranger to your own body — to be so absolutely marred with discomfort that the feeling of being at ease is foreign. Waking up is a reminder of being a prisoner, tightly wound and carrying the weight of the world on your shoulders, literally.

When I was diagnosed with Fibromyalgia at the age of 14 (more commonly known as Myofascial Pain Syndrome at the time), I was told there was no cure for it. I only had the option to manage my pain cycles and live with the disorder.

To provide you with some background, Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep issues, memory problems and mood disturbances. In the folly of my young mind, I thought such a terrible thing couldn’t really happen to me. I believed it would all go away if I just religiously attended my physical therapy sessions.

Fast forward 10 years later, and I still have it. Day by day, it weighs on me and viscerally takes over my life.

I stopped going to my physical therapy sessions when I reached the one-year mark at the age of 15 because it wasn’t inexpensive; at that time, I was also relying on my dad’s health insurance. So you can imagine how my condition worsened over time after stopping my treatment. I tried many alternative methods: Chiropractic care, blind massage and more, but nothing worked. When it did work, it provided only temporary relief.

At the beginning of this year, I noticed how much worse the pain in my entire body had become. I woke up in the middle of the night with twitches (Restless Leg Syndrome is one of the side effects of Fibromyalgia), and I couldn’t go back to sleep due to the dull ache in my lower body. When I woke up, I felt caged in and unable to breathe freely.

Sometimes, I couldn’t even work because I’d be hunched over in pain since even the slightest movements would trigger a “fibro flare” (symptoms increasing in intensity). I’d lie in bed, imagining what it would feel like to be an able-bodied person.

With drastic changes in my life and added stressors, my condition took a turn for the worse. Apart from the physical anguish I faced, I also dealt with depression and anxiety as side effects. It can be incredibly lonely when no one understands your pain. I had to extensively explain my condition to people, only for it to be dismissed as “pamaol.”

When I registered as a PWD (Person with Disability) cardholder, I received quick once-overs from the people I showed it to. I even looked like the biggest jerk in public transportation when I refused to budge over a seat.

Recently, I resumed my physical therapy sessions months prior writing this article. I went to Pain Management Plus, where I was able to undergo a six-week program of gentle therapy that helped alleviate and manage my condition.

For the first time in years, I was able to breathe without expecting pain to follow suit. However, it also planted a deep-seated anxiety in me that the relief I felt was fleeting, and one wrong move could leave me in excruciating pain again.

The thing about disability is that it’s not just about being incapacitated by your affliction alone. How people perceive and treat you adds to the debilitating anguish. I’ve been questioned extensively if I genuinely qualify as a disabled person, which made me second-guess my entire condition. Am I simply making a big deal out of this? Am I really not sick? I had to learn to accept the fact that I can never make everyone understand the sickness I have to live with.

Fibromyalgia is a prevalent chronic disorder that needs more awareness and understanding, especially in a country like ours that has yet to fully grasp the severity of the condition. As someone who personally suffers from it, this is my way of amplifying the cause of spreading knowledge about this debilitating condition. People don’t have to see our pain for it to be real.

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