an adult woman drawn with a rainbow of colors listens closely to the speech bubbles coming from her body

Paying Attention To Body Language

When you hear the phrase "body language," you immediately think of non-verbal cues that we use to communicate: crossed arms, head movements, eye behavior, and facial expressions. That's not the focus of this article. I'm talking about the art of listening to your body; being mindfully aware of how you feel externally when things feel different internally.

For most of us, our body knows something is wrong before we do. Listening to your body requires tuning in to your thoughts, feelings, and behaviors in addition to awareness of symptoms that could be unusual for you.

Listening to your body with sickle cell

Have you ever woken up and felt the early onset of a pain crisis but ignored the signs because you had things to do? Most of us have been there and we live to regret ignoring some of those warning signals. Even with healthy people, failure to listen to your body can cost you, especially as you get older. It is therefore imperative to learn your body’s limits and set boundaries accordingly.

Adulting can be hard and sometimes. We forget to check in with ourselves, take care of necessities like eating or hydration, and fail to prioritize slowing down or taking a break. For patients with chronic illnesses like sickle cell, feelings of inadequacy are a common psychological issue. This is often characterized by an inability to cope with the social, emotional, occupational, and intellectual demands of life.

These feelings often trigger an innate desire to outperform and over-achieve to compete with peers/colleagues. When you over-exert yourself to make up for missed school or work days, you put your mind and body under extreme stress that can ultimately cause an episodic vaso-occlusive crisis.

What is my body telling me?

The unfortunate reality of the global healthcare system is that most times, you have to be a vocal advocate if you want to be taken seriously. Depending on the symptoms, your body could be trying to tell you that something is wrong and requires medical attention.

For example, many people experience fatigue, irritability, anger, headaches, and rapid heartbeats when hungry or dehydrated. It is why medical researchers coined the term 'hangry'. These symptoms can make you upset and agitated because you've failed to realize that the primary cause is an inconsistent meal schedule, particularly during the day.

I have struggled to understand my body since the stem cell transplant was done. No one prepared me for the quality of life I'd have post-procedure. The curative therapy stopped the sickling process but did not repair avascular necrosis in the hips and shoulders. So, I honestly didn't feel sickle cell-free until my immune system was 18 months out.

You see, chronic pain is the hallmark symptom of sickle cell, caused by an acute crisis. Because it happened so frequently, I didn't know how to differentiate the types of pain I experienced. Now I keep a pain journal which I share with my providers monthly; it helps me to group my pain into neuropathic pain or chronic pain syndrome. Once we know the type, we treat based on intensity.

Effects of unhealthy nutrition

One major area I've had to study on my own is the effect of unhealthy nutrition on my body. For 30 years, I consumed added sugars, and aside from the occasional cavity, I was totally fine. After the transplant, any consumption of sugars, added or natural, triggered acne, weight gain, fatigue, joint pain, and muscle stiffness.

At first, I felt frustrated because one of the primary reasons I participated in a clinical trial was to get rid of pain and have a better quality of life. Instead, I woke up with severe joint pain. My test results came back inconclusive and I was tired of taking medications daily. Completely unhappy, I tried yoga, Epsom salt baths, physical therapy, and meditation, but nothing seemed to work.

Months later, I was connected to a transplant survivor. After explaining my symptoms, she immediately recommended water fasting for 24 to 72 hours. A water fast is a period when an individual eats no food and drinks nothing but water; some people use it for weight loss or religious reasons but I was actively trying to tackle a health problem.

It is my understanding that to do the water fast safely, you need to prepare by choosing a good time to go without food, particularly when the body does not require too much energy. On day 2, I noticed the joint pain was gone. Although I felt hungry, I was surprisingly alert. There was no fatigue or tiredness. I still cannot believe that added sugars in my fruit juice pack had such adverse effects on my body.

The human condition factor

Please be aware that while some signals from your body could be symptoms of a larger issue, they could also just be side effects of the human condition. If you have a symptom that feels off, check in with yourself and do a quick body scan. Ask yourself: Have I eaten, am I hydrated, or did I have a stressful day at work? - sometimes these things could be the culprit of your symptoms.

Tip – Do not rely on internet searches, especially on sites like WebMD. It is not a substitute for going to the doctor and sometimes, it can make you worry even more.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Sickle-Cell.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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