I heard early on that effective communication was the key to unlocking intimate relationships.

As I grew older, I was proud to share my ideas with people clearly and gracefully. However, my confidential communication abilities abruptly failed when I was diagnosed with severe migraines in the 1920s. The disease changed everything.

Conversations regarding my illness were first filled with awkwardness and detachment. I didn’t know how to communicate my experience for the first time.

Chronic disease causes an enormous gap between my exterior (unmodified) look and my inside feelings.

Many think that a migraine episode is “simply a headache.” However, migraine is an unseen, weak state. Its many diverse symptoms might vary daily or from hour to hour. 

Explaining My Disease

I haven’t always understood how to make this hidden part of myself comprehensible or share the care process with others.

In addition, I’m scared of being judged or even rejected by individuals I trusted by repeated instances of disbelief by physicians. 

However, six Americans out of 10 live chronically. Women suffer one or more chronic diseases throughout their lives, in particular.

Talking about my chronic disease now feels like second nature, whereas it took me a few years of practice.

I hope that my experience and the communication skills you use can enhance your connections with others in your life when you also live with chronic pain. 

How can I describe how I feel to others when I cannot grasp my own experience? Although my situation is frequently perplexing and chaotic, it has taught me proper language. 

Chronic Illness Community

I learned that the chronic community had my back in the first several years of my diagnosis. New concepts and terminology have made my invisible disease come to life for others.

Now, I use a word when my symptoms suddenly worsen (flare-up), define my energy management effort (the theory of spoon), and explain why I split up routine chores into pieces (pacing). 

A typical shorthand is a game-changer where you confront limited energy and emotional bandwidth to convey. Instead of detailing many symptoms, it’s easier to say to a buddy, “I flare now.” I may decline by stating, “I am low in Spoons,” when my sister wants to know if I have the energy to call.” 

All these phrases should be shared, yet the chronically ill are nonetheless isolated by ignorance and stigma.

Sharing this terminology helps educate and strengthen capable allies who can contribute to more awareness-raising and accepting effects. 

A Pain Scale

Another essential technique to communicate your feelings immediately is increasing pain or symptoms.

While numbers can only present a restricted view of the truth, they are a fantastic way to help influence someone’s actions. 

I utilized a pain scale from one to 10 with my family early on in my diagnosis.

If I were 4, they would understand that I could make specific activities and conversations more autonomous.

I know. When I was seven, they went into care mode while I focused on handling. 

It may be very drained on a high day of pain, explaining how you feel and what you need.

Although numbers cannot give subtlety, they are a fantastic tool for protecting valuable energy and saving. 

Explaining your feelings and needs might be an incredible drain on a high day of agony.

Although numbers cannot express nuances, they are a beautiful means of safeguarding valuable energy and saving your spoons.