Who Needs to Know About Your Chronic Illness?

In 2003, Suzan Jackson was diagnosed with myalgic encephalitis, or chronic fatigue syndrome (ME/CFS). Shortly after, she was faced with the complexity of having a chronic illness. Should she tell friends and family? Should she try and explain her symptoms to others? If she did, how would she handle their reactions? Now, Suzan is more at ease with her diagnosis. She offers advice on how to handle these potentially difficult conversations and what type of approach to take. Read Suzan’s full story on ProHealth.

Chronic Fatigue Syndrome

Doctors aren’t sure what causes myalgic encephalomyelitis (chronic fatigue syndrome). This chronic disorder is categorized by severe fatigue that does not get better with rest. It generally impacts women more than men, and symptom onset commonly appears between ages 30 and 50.

Symptoms of ME/CFS vary and might worsen (or lighten) over time. They include:

  • Severe fatigue that worsens with physical activity and does not improve with rest
  • Dizziness
  • Low stamina and an inability to do activities like cooking, laundry, or showering
  • Blurry vision
  • Joint and muscle pain
  • Headaches
  • Sore throat
  • Gastrointestinal issues
  • Issues with sleep and concentration
  • Depression
  • Swollen lymph nodes

Read more about ME/CFS.

Suzan’s Experience

Suzan first faced the difficulty of having a chronic illness at her 20-year high school reunion. A classmate approached her to ask how Suzan was, and how her life had progressed.

Suddenly, Suzan froze. What was she supposed to answer? Her condition made it difficult to do the same activities as she liked, or to thrive in her career. But she also felt strange telling her truth, almost as if it would ruin the mood. So she kept quiet. Still, she spent the night grappling with the meaning of her ME/CFS: no drinking, sitting a lot, fatigue, exhaustion.

Now, Suzan is better able to discuss her condition. But she also has some advice for people with a chronic illness who still aren’t quite sure what to say.

Talking about Chronic Illness with: Friends and Family

When you receive your diagnosis, you may discuss it right away with friends and family. In fact, you may even tell them about your journey towards diagnosis. But when it comes time to fill in details, what should you do?

Suzan suggests sending an email or text message to your close friends and family to fill everyone in at once. This allows everyone to better educate themselves on your chronic illness. At the same time, it also allows them to ask nuanced questions on what to do if certain situations arise. For example, for someone with ME/CFS, friends and family can ask how you might want to navigate a social situation if you are extremely fatigued.

Some details you can include are:

  • The name of your condition and what type of condition it is (autoimmune, neurodegenerative, muscular, etc.)
  • The symptoms that you specifically have
    • This not only lets people know what you’re experiencing, but what to keep an eye out for. In Suzan’s case, she experienced worsening fatigue after exercise, flu-like body aches, sore throats, and severe fatigue.
  • The cause of your condition (spontaneous, unsure, genetics, etc.)
  • The treatment or cure for your chronic illness
  • How you will address the condition moving forward / any lifestyle changes
    • For example, Suzan’s fatigue worsened after exercise. So she explained that, in the future, she will need to rest more frequently, restrict any physical activity, and try to avoid stressful situations.
  • Additional resources (websites, books, journal articles)
  • Appreciation for their support

Talking about Chronic Illness with: Acquaintances

If you have a chronic illness, you may not feel comfortable talking about it with acquaintances. That’s okay! Ultimately, this is your journey; you have to do what makes you feel best.

However, if you do feel like talking with acquaintances, there are a few ways to approach it. One way is to just be somewhat straightforward. For example, Suzan notes that she will usually respond to “How have you been?” with:

“I have an immune system disorder that can be quite debilitating, but I have found some treatments that help and have learned to live with it.”

Then she bases the remainder of the conversation on the response received: moving on if the person seems uninterested, or answering any questions. These questions may relate to the illness name, symptoms, or simply how you are handling it.

When responding to questions, Suzan advocates being upbeat, straightforward, and succinct. Additionally, responses should depend on what questions are being asked. For example, if someone asks her to volunteer at an event, she may say: “I have a chronic illness and I am usually tired in the afternoon” rather than “Well, I have chronic fatigue syndrome. It is an autoimmune disorder that causes fatigue, muscle pain, etc. and so the afternoons are usually difficult for me. But maybe if…”

However, the choice is ultimately up to you: “who to tell, how and when, and how much to say.”

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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