The Caregivers Guide to Understanding the Chronic Pain and Illness Experience

Trying to show support to loved ones living with chronic pain and illness is hard.  You may even feel like your efforts to help are falling short.  In this article I explore some main points about this topic so caregivers and loved ones have more information about chronic pain and illness.

The first thing to remember is that everyone’s health and pain experience is different. That means this article will not in any way be able to cover all the different aspects on this topic, but I will do my best!

How do you show support as a caregiver?

Are you asking your loved one questions about their condition? Or how about their most recent doctor appointment?

While these efforts are well intentioned, those with health conditions prefer talking about other topics. They need that mental and emotional break from their illness symptoms.

Having conversations about other topics is often welcomed to help them have a sense of normalcy. Those with chronic illness often feel like their illness has taken over their life.

Talking about other topics gives them a mental break from it all.

Those with chronic illness and pain deal with many challenges, and they tend to look forward to the moments where they can take their minds off of the pain and stress for a short while.

What does it Feel Like to Have Chronic Pain and Illness?

Living with chronic pain and illness is an exhausting experience. They often feel tired and go through a variety of emotions because being in pain all of the time takes a toll.

Even though they find themselves tired most of the time, they put on a brave face to show the world that “everything is fine.” 

If they don’t do this, then conversations will begin where people ask them, “what’s wrong?” and “how are you feeling?”

Those with chronic pain and illness will talk about their health, but prefer to do so with those they trust most. They will not get into deep conversation about their health with people outside their circle of trust.

Doing so could cost them their emotional and physical energy reserves.

Quality sleep is often hard to come by too when chronically ill.  Chronic pain and illness means the pain symptoms are frequent and unwavering most of the time. The pain continues during sleep which leads to waking up feeling tired and not rested.

With poor quality sleep and limited energy resources, those with health conditions seek out alone time to rest.

This is especially true when they have work, medical and other personal commitments every day. Having down time to rest and be alone is often needed for them to support their mental and physical health.

Chronic Illness and Pain are Not Linear Journeys

Some chronic health conditions may never get better while others may go up and down in symptom severity.  Others are able to recover from their conditions; but no two outcomes are alike.

The hardest part in navigating chronic medical conditions is coming to terms with a new normal.  The person with chronic pain and illness will make changes in their life to honor and acknowledge where their health is at this time.

This phase can be a lengthy process which is where therapy and a support network is needed.  To learn more about how I can help, please go here.

Over time, new ways of living with pain and illness can lead to that person living a more fulfilling and enjoyable life.

Through adapting to the new normal, those with chronic pain and illness can become more attuned to their physical and medical health needs. This in turn helps them to better attend to their self care in a way that is more intentional in giving the body the support it needs.

This skill can further help them as they work towards healing and recovery.

Support from Loved Ones

Having a supportive community is incredibly important for those with chronic pain and illness. 

While their doctor appointments and medical treatments are essential, receiving emotional support from trusted loved ones is just as significant.

The communities a person surrounds themselves with can either help or hinder their mental, emotional and physical health.  Taking steps to provide the right kind of support is key.

Many Feel Isolated

It is common for those with chronic illness to experience feeling judged and misunderstood by those around them.  This often leads to further feelings of isolation from others.

Feeling isolated shows up due to past experiences where the person with health challenges was left feeling unsupported and judged.

Some statements those with chronic illness may hear from others could be,

“Are you sure what you’re going through is not all in your head?”

Another type of response could be,

“Maybe you’re just overreacting and you’re just stressed out.”

Or “Oh I am sure it’s really not that bad!”

Unfortunately it is statements like these that leave those with chronic illness conditions feeling unsupported and unacknowledged in what it is they are going through.

As a result, feeling invalidated and invisible in their struggles sets in.

Chronic Illness and Invisible Illness

Many with chronic illness have medical conditions that are not overt and easy to observe by others.  That is why the term invisible illness is often used.  Having an invisible illness tends to increase feelings of isolation from others because the outside world does not see why they are ill. 

The outside world does not understand what their medical circumstances are, and therefore are unable to emotionally connect with someone with an invisible illness. 

Resistance from the Medical Community

Having an invisible illness and chronic pain not only can make a person feel invalidated by those in their community, but the same can take place in medical settings.  It is common for doctors and medical staff to not take a patient’s symptoms seriously.

As a result the following can happen:

  • The patient’s medical diagnosis process can take longer
  • The patient’s physical pain and emotional stresses are prolonged.
  • Medical treatment options and medical interventions are not pursued in a timely manner by the medical team.

A Supportive Community Matters

This is why it is so important for caregivers and loved ones to support those experiencing chronic pain and illness. Those with chronic health conditions are looking for answers and treatment, so support from loved ones can help them stay focused and motivated.

In contrast, not having a supportive community can leave the person with chronic illness in a state of inner turmoil.  This is especially true when they are having difficulty getting adequate medical care from clinicians who are not accurately diagnosing or treating their conditions.

Ways Caregivers Can Support Those With Chronic Illness

Ways to show your support to those with chronic illness does not have to be complicated.  The main way to show them that you care is to listen. 

As a caregiver, you are not expected to have all the answers for your loved one who is chronically ill.

What can make a big difference in feeling more supported and validated is for loved ones to show empathy and understanding from a place of compassion.  

Checking in on them to see if they need anything is another way to show your support.

To read more about ways to show your support for someone with chronic pain and illness please go here.  If you are looking for more ways to support yourself as you navigate your health conditions, then please go here.

Other ways to support your loved one with a chronic illness is to help them get connected with a counselor or therapist.  Individual and group therapy can be the missing piece they are needing.

In therapy, they can talk about their struggles and frustrations in a supportive setting. 

Therapy allows them to fully explore and process their feelings while also learning new ways of coping.  The combination of the two can help them to feel more resilient and better equipped to handle whatever stresses and obstacles come their way.  

How can Therapy Help People with Invisible Illnesses

Therapy for chronic illness patients is often overlooked because the person with chronic illness is probably focused on doctor’s appointments and other scheduling commitments. 

They are hyper-focused on medical care and treatment, so therapy does not even come to mind.

In truth, talk therapy can be incorporated as part of their medical care plan. 

Any doctor will tell you that finding ways to reduce and manage stress is an important piece that needs to be addressed to benefit one’s medical and mental health conditions.  

By now, you have come to realize just how stressful living with chronic pain and illness can be. 

This means that not addressing the stress and overwhelm can lead to worsening medical and mental health symptoms over time.

If you are a caregiver or someone living with chronic pain and illness, please know that you are not alone in this.  Therapy is a place to talk about these concerns while also coming up with solutions so you get the support you need.   

To learn more about this topic, feel free to listen to my interview on the Therapy Chat Podcast listed below.

If you would like to see how I can best support you, please call me at 818 599-3048 for a free discovery call.

Daniela Paolone

Daniela Paolone LMFT is a Marriage and Family Therapist and founder of Westlake Village Counseling in Westlake Village, California. She helps those working through pain, illness, depression and anxiety either in the office or through online counseling which is done using a secure platform to ensure client confidentiality. Using education, helpful resources, unconditional support and understanding, she strives to help people transform their pain into power so that they can live their best lives!

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