An Open Letter to Those with Chronic Illness / Pain and their Caregivers

An Open Letter to Those with Chronic Illness / Pain and their Caregivers article by Daniela Paolone, a woman sitting on a beach shore
Women In Depth Podcast  Understanding and Supporting Those Living with Chronic Pain and Illness – Episode 5 featuring Daniela Paolone

Women In Depth Podcast

Understanding and Supporting Those Living with Chronic Pain and Illness – Episode 5

Some people say that change happens when we push ourselves outside of our comfort zone so that is what I am doing today in writing my first blog post!

In sharing a little about myself, my hope is to provide support and be a voice for those of you who suffer from chronic illness and pain since this is also part of my story.  I also hope to provide some clarity to those of you who are supporting friends and loved-ones dealing with a chronic health condition.

So what exactly does it mean to have a chronic illness or have chronic pain?

Basically it means you have a health condition that requires you to visit doctors, physical therapists, acupuncturists and other health professionals to work on reducing your uncomfortable pain/health issues.

It also means that there is no “quick fix” or “magic pill” that will completely resolve your health symptoms.

Typically this  means that your particular situation requires specific treatment that is going to be very individual to you and your needs.

Treatment will probably be time consuming and expensive too.

What do those with Chronic Pain/Illness really need?

Unconditional love and support is needed most

  • They need unconditional love, support, and someone who is ready to listen and empathize.

  • Statements where loved ones are acknowledging how another feels and connecting with them where they are at emotionally, can be very powerful.

Supporting them in this way is both beneficial and effective, and is by far a better way to connect with them when they are in pain and feeling misunderstood. 

Oftentimes, friends and family don’t know what to do or say when a chronically ill loved-one is seeking support and reassurance.  Conversations between the healthy person and chronically ill person can make the healthy person feel uncomfortable.  To cope with this feeling, the healthy person may try to spin the conversation into a more solution-oriented direction.

For instance, they might say things like “Did you try this medicine… or see this doctor etc.” 

By doing this though, they are actually dismissing what the person with chronic illness is feeling and experiencing.

Again those of us with chronic health conditions know that our loved ones mean well, but this type of interaction can be in fact, the opposite of helpful.

Why you ask?

Well because this is something people with chronic illness encounter on a regular basis; be it from relatives, colleagues and friends.  Another common occurrence we experience is being pitied by others.  Now when I say pitied, it could be conveyed by their voice tone or facial expression.  They may not even say a word, but give you a look that implies they have pity for you due to your health situation.  Again, these types of interactions are not helpful and are not going to help a chronically ill person get the support they are seeking.

Ways to Provide Support

Chronic illness can bring up a wide range of emotions about their own health, with plenty of ups and downs; so receiving this kind of energy of pity can be unhelpful on many levels.

Living every day with a chronic condition demands a lot of physical and emotional energy which can be in short supply.  Perhaps now this helps explain why those with chronic conditions prefer being supported and understood through empathy, patience, understanding and attentive listening.

At the End of the Day

Those of us with chronic illness conditions will go through many emotions and will likely get frustrated at our own health situation if progress is slow and wavering.  This is why it is so important to make efforts to be patient and think of this experience as a marathon.  Some of us might not be able to reach our desired goals of complete health in the end though.  This is where the term acceptance comes into play.

Now who on earth wants to accept being sick and in pain? Well no one really wants that of course! However, living in a place of frustration and anger won’t help your mind and body get the support and care it needs either. Perhaps at the end of the day you will come to a place of understanding what your new normal is which in turn can make room for you to live your life despite your symptoms.

If you would like to learn more please listen to this interview where I talk about this topic in greater detail.  You can also take a look at these articles titled The Struggle With Parenting: How to Parent with Chronic Pain and Parenting When Your Child Has Chronic Illness to learn more.

Previous
Previous

For Quality Sleep, Just Say No to Blue Lighting