Chronic Pain: More Than a Sidekick

It’s just another morning. Except you wake up with pain in your body and swollen joints. You spend your first few minutes thinking about the plans of the day and how you’ll need to cancel each of those. You’re dreading all the (repeated) explanations you’ll need to provide, from your reporting manager to your friends - about your chronic pain.?

“Maybe I can somehow pull myself out of the bed and get work done.” - Even thoughts like these come to your mind as you would rather champion through pain than provide explanations.?

This is one of the many common instances for people with chronic pain. As someone with Rheumatoid Arthritis since childhood, I have relived varied versions of this narrative for years.?

Pain doesn’t come with a date and time.

You never know when the pain is going to shoot up, which morning you’ll end up with swollen joints, or what really triggers an attack. You might have a regular day at home having healthy food and exercising and wake up the next day with throbbing pain.

September is (Chronic) Pain Awareness Month

The World Health Assembly (WHA) (part of the World Health Organization) declared September as Pain Awareness Month. Many organizations, such as the Arthritis Foundation, the U.S. Pain Foundation, and the International Pain Foundation, have joined hands to spread awareness about chronic pain during this month and beyond. In fact, the American Massage Therapy Association (AMTA) has come up with resources to help people manage their chronic pain with massage therapy.?

As per the American Academy of Pain Medicine, over 1.5 billion people in the world suffer from chronic pain. In the US alone, almost 50 million people live with chronic pain, according to a study by the US Pain Foundation. According to a study by the Interventional Pain and Spine Centre (IPSC), more than 19 percent of the Indian population suffers from chronic pain, of which 25 percent is female.?

Everyone goes through pain in their body at some point in their lives - so what’s the big deal? Chronic pain is more than that.?

What is Chronic Pain?

You may feel incidental pain sometimes because of specific episodes such as sudden falling down or accidentally burning your hand on a hot stove. This kind of pain usually stops once the injury heals. That is not the case with chronic pain.

When the pain in the body persists and continues for weeks, months, and even years, it is chronic pain. Officially, pain is stated to be chronic if it lasts for more than 12 weeks. Common types of chronic pain include chronic back pain, headache, joint pain, and more.?

Apart from arthritis, some of the usual causes of chronic pain are past injuries, fibromyalgia, autoimmune conditions, nerve damage, etc. However, often, causes of chronic pain are unexplainable and not well-understood. Knowing the origin of the pain is important not only for the treatment plan but also for claiming benefits.?

Chronic pain is subjective.

Chronic pain is experienced and perceived by different people differently. Moreover, there is no direct way to define and standardize chronic pain. As a result, getting complete relief is not always possible.?

More Than Just Pain

Chronic pain is not just an incessant pain in the body. A person with chronic pain also suffers one of many symptoms, which include fatigue, lack of sleep, tiredness, and loss of appetite.?

Pain often restricts the person or interferes with daily activities such as household chores, office work, or socializing. In fact, the days when a person is active do not necessarily mean that the pain is gone. It just means that the pain is manageable on those days.?

“You don’t look like you are in pain.”?

Chronic pain is generally invisible to the eyes because people often put effort into concealing their pain from others’ notice. According to a 2022 survey by the US Pain Foundation, 79 percent of respondents feel stigmatized because of chronic pain.

Chronic pain affects the physical, mental, and emotional health of a person. Posttraumatic stress disorder (PTSD) often follows pain. The negative perceptions, attitudes, and biases against people with chronic pain make the situation worse.?

“It doesn’t seem like you were in pain yesterday. You look totally fine today.”

Pain can be unpredictable. This instability often makes people not believe in your word. Your acquaintances might passive-aggressively accuse you of lying or making excuses. Even if they trust you, they might get frustrated by the instability, especially if it is someone you need to meet regularly, such as a coworker or a partner. The ongoing pain along with the external stigma can take a toll, making the person feel anxious, depressed, stressed, angry, hopeless, or sad.?

Moreover, when the constant pain signals keep your brain busy, the nervous system gets affected. This leads to insomnia and a lack of concentration in the long run. On the other hand, lack of sleep and stress can make the pain stronger. It is a vicious cycle after all!?

The overwhelming and unpredictable pain, along with the social stigma, can be highly disabling for a person. But the important question here is: is chronic pain officially a disability? Let’s find out.?

The Identity Crisis

"You're not disabled enough."

People with chronic pain or chronic illnesses often suffer from an identity crisis. I still remember joking with my friends that I am disabled in the US, but not in India.

The truth is chronic pain often leads to disabilities in the long run. Moreover, chronic pain itself comes with a set of disabilities.?

However, we generally have a narrow perception of disability - that disability needs to be visible, and the person with disability needs to use some assistive device. Similarly, often people with chronic pain themselves do not realize that they are eligible for disability benefits. In fact, even if some realize it, they would rather hide their struggle over facing the stigma around being a person with disability.

The Americans with Disabilities Act (ADA) defines a person with disability as someone with impairments that reduce or limit one or more life activities. This definition includes people with chronic pain or people like me who have suffered from inflammatory diseases and chronic pain for years, leading to certain restrictions.?

According to the United Nations, persons with disabilities include people who have long-term physical, mental, intellectual, or sensory impairments that may restrict their participation in social activities with others. Additionally, the Social Security Administration in the US considers one eligible if the person’s condition lasted for a minimum of 12 months and restricted the person from performing their job.?

“The Social Security Administration in the US historically excludes chronic pain from the definition of disability.”?

Although the definitions of disability may be similar, different countries have different sets of ailments and disabilities that qualify for disability benefits. For example, certain disabling ailments and chronic pain are not directly a part of the list in the Rights of Persons with Disabilities (RPwD) Act, 2016 in India.?

“Pain is the major reason that makes Americans access healthcare and costs the nation up to $635 billion each year.” - US Pain Foundation?

The irony is that a person with chronic pain is not automatically qualified for disability benefits in the US. Chronic pain is subjective and is highly based on a person’s perception of pain. Consequently, you won’t find chronic pain on the Social Security list of eligible impairments for disability benefits. However, you can find long-term diseases such as Rheumatoid Arthritis in the list that cause chronic pain. You’ll need to file for a residual functional capacity (RFC) assessment for the qualification.?And guess what? It is a tiring and draining process.

Dealing with the continuous pain was not enough; the person also has to go through such restrictive and lengthy processes to prove one’s identity of self.?

Support People with Chronic Pain

Self-care: Self-management techniques, such as hot and cold therapy, compression techniques, massages, and more, can help during painful episodes. In case of severe pain, seeking medical support is essential for diagnosis. The doctors might advise one or more ways, such as spinal cord stimulation, discography, chiropractic care, and epidural injections. Moreover, you can join pain management support groups. It is important that you open up about your pain to your dear ones for support.?

If you are willing to take the next step, you can even start being vocal about your journey and spread awareness. Stories directly coming from you amplify the voice of the community.?

Social support:?The most important thing you can do to support a person with chronic pain is to listen without judgment or prejudice. You can’t reduce their physical pain, but your support can reduce their stress, anger, and shame. The person opening up to you is a huge step. Do not push your suggestions immediately - just listen.

If you are a manager, a coworker, a friend, or a partner to a person with chronic pain, you have to learn to be patient, compassionate, and mature. Moreover, you can do your own research. But make sure that your research does not overpower what the person with chronic pain is trying to tell you.?

Small gestures such as being there for them during painful days or doing a few chores on their behalf can be meaningful support. Above all, showing your support and creating awareness in your own way can help break social and cultural stigmas.?

“40% of workers in America suffer from chronic pain.”

Institutional support:?Most people with chronic pain hide their condition in their workplace because of fear of stigmatization, bias, or unemployment. Workplaces need to create a safe space for employees to open up and speak out. But that is not enough. The person on the other side needs to be aware of the condition and be ready to listen without any preconceived ideas. This, in turn, calls for company-wide awareness programs to educate employees.?

The flexibility of the job is the key to meeting the various needs of employees with chronic pain. For example, if someone is unable to come to the office one day due to pain but can manage to work from home, you have to provide them with that option. But managers have to be wary of subconscious proximity bias.?

Moreover, companies can support their employees with different needs with customized ergonomics. Try making the workplace pain-free with inclusive designs.?

Bureaucratic processes of qualification need to be simplified. The Social Security Administration in the US can make this happen by developing a better data collection process for pain claimants and predictive models for pain claims. The process of proving one’s disability should be streamlined if the goal is really about compensation and rehabilitation.?

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Let’s take this opportunity to speak out about chronic pain: a perceived sidekick, often unheeded and untreated.

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* Sources are mentioned in the comment section.