This article shares tips on explaining chronic fatigue syndrome to doubting friends and family, using simple terms, vivid daily examples, clear requests, medical facts, and comparable illnesses to build empathy for your limits.
Chronic fatigue syndrome (CFS) is a tiring illness. People with CFS look healthy but feel exhausted all the time. CFS is also called ME/CFS or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
Living with CFS can be lonely. Friends and family may not understand your constant tiredness and limits. They might think you are lazy or making excuses. How can you help them “get it”? Here are some tips to use when explaining chronic fatigue syndrome to others.
Related Article: Being an Entrepreneur with Chronic Fatigue
Define CFS in Simple Terms
Use easy words to explain CFS. Say it is an illness where your body feels extremely tired all the time. Even after resting a lot, the tiredness continues. It is not in your head or caused by being out of shape. Something in your body does not let you make energy properly.
Comparing CFS to mononucleosis (mono) makes sense to most people. They understand mono makes you feel exhausted for weeks or months, even with sleep. Explain that with CFS the fatigue never goes away completely. It comes and goes but you never feel refreshed.
Avoid complicated terms like post-exertional malaise. Stick to plain language they can grasp. For kids, compare it to having the never-ending flu.
Share Your Daily Challenges
Describe how CFS makes your daily life hard. Talk about simple tasks that wear you out quick. Explain how taking a shower can wipe you out. Or how walking your kid to the bus leaves you too fatigued to make breakfast. They may not know heating up food is exhausting.
Paint a picture of your day to day reality. For instance, say you need a 2 hour nap after driving to the store. Or doing laundry means no other plans that day. Share examples of the trade-offs you make to conserve energy.
Explain CFS Randomness
One tricky aspect of CFS is the constant ups and downs. Some days you may feel slightly better and do more. Then you crash the next day unable to get off the couch. Your energy comes and goes randomly.
Help them understand how unpredictable CFS is. Say you never know when you will have a little energy and have to choose what to spend it on wisely. Make clear that you can’t plan in advance because of the inconsistency.
Describe Your Energy Bank
Imagine energy like money in a bank account. Explain that a healthy person has a full bank account to make withdrawals from each day. You can overspend sometimes and it will refill.
With CFS your energy account carries little balance. It does not refill fully overnight. You must budget it carefully. Explain that even a small overdraft has big effects. Going over your limit means being bedbound for days.
Ask Them Not to Judge You
Many people think chronic fatigue is imaginary or exaggerated. They may doubt you really feel that sick. Or assume it can be powered through with enough will. Explain there is real damage stopping your cells from making energy. Ask them not to judge what they do not experience.
Say comments like “I’m tired too but I still get everything done” minimize your pain. Ask for compassion. Remind them you do not choose to live like this. You wish more than anyone you could be active and carefree again.
Make Invisible Illness Visible
A major challenge in CFS is people cannot see your disability. Since you look fine on the outside they expect your performance to be normal. Help them recognize your limits are real even if invisible.
Explain that just because your illness is invisible does not mean you are faking it. Say “If I had a cast on my leg you would understand I couldn’t be as active. Please treat my exhaustion from CFS with the same respect.”
Describe it as having no stamina even though you do not look sick. Let them know accommodation helps you manage activities in spite of the fatigue.
Share Medical Facts
Educating people on key facts lends credibility to the seriousness of CFS. Explain that CFS:
- Affects up to 2.5 million Americans
- Main symptom is fatigue lasting 6 months or longer
- Is recognized as a disease by the Centers for Disease Control
Point out that scientists are still working to understand what causes CFS but it is clearly shown to be a biological illness, not imagined. It is as real as other chronic conditions.
Make Requests Concrete
Telling friends “I can’t do much” is vague. Give specific ways they can assist based on your current capacity. For instance:
- Could you walk my dog Tuesdays and Thursdays?
- I can no longer host dinner parties but would love to do a monthly brunch.
- Let’s meet for coffee or a movie rather than all day shopping trips.
Putting boundaries in clear terms prevents misunderstandings. Explain exactly what you need.
Enlist a Care Coordinator
Recruit one supportive friend or family member to be your point person. Have them communicate updates on your condition to others. It saves your limited energy.
Make sure they fully grasp CFS themselves first. Tell them what you want relayed on bad days or after a relapse. “Joan needs to rest today. Please no calls or visits.” Or “Joan’s symptoms are flaring up this week and will have to miss book club.”
Let your care coordinator field questions and concerns. Reduce your burden of repeating explanations over and over.
Compare Restrictions to Other Illnesses
Comparing CFS limits to something they relate to can help build empathy. For instance:
“When I had COVID, you brought meals and visited less because I was so weak. Please treat my current CFS crash the same way.”
Or “You know how Grandma has to check her blood sugar and give herself insulin shots? I also have to manage a chronic illness day-to-day.”
Use examples they already understand. Ask for similar modifications and patience.
Offer Ways to Really Help
When told “let me know if you need anything”, give specific ways people can help. Ideas might include:
- Bringing by a home cooked meal
- Helping with yardwork or house cleaning
- Picking up groceries or pharmacy orders
- Driving you to doctor appointments
Make it easy for caring friends to lend tangible support. Have simple chores they can take off your plate listed.
Help Them Feel Empowered
People want to fix you by giving well-meaning advice. Redirect that care into empowering actions like:
- Donating to a CFS charity in your honor
- Volunteering as your care coordinator
- Researching CFS online and sharing articles
- Raising awareness through social media
Tasks that contribute to the CFS community help friends feel they are making a real difference.
Use a CFS Diary
Keep a diary of your daily symptoms. Note times you push yourself too far. Record instances when friends do not understand your limits.
Review the diary together periodically. Pick a few examples that illustrate your fatigue or post-crash worsening. Track how often you say no to invitations versus agree reluctantly. Use real data to tell your story.
Find Validation Among CFS Peers
Connect with fellow CFS patients online or locally. Support groups build community with others who know your daily struggle. Don’t let isolation add to the burden.
Surround yourself with people that validate your illness and build you up. Limit time with “friends” who assume you are exaggerating. Avoid those draining your spirit along with your energy.
Be Open to Reactions
Loved ones often go through stages adapting to chronic illness. At first they may respond with disbelief, anger or avoidance. Over time most move to acceptance, though denial persists for some.
Prepare for difficult reactions. Know they usually reflect fear or discomfort with the unknown. Emphasize you need support, not judgment. With patience, honesty and joint education, most relationships can be preserved or strengthened.
In conclusion, use basic terms, vivid examples and clear requests when explaining chronic fatigue to get others to grasp your limits. Boost credibility by sharing medical facts. Promote concrete help over blind advice. And connect with those who empower you with understanding. With work and mutual good will, your circle can learn what you go through. While CFS remains overwhelming, feeling surrounded by support makes the burden lighter.
Michelle D. Garrett is the founder of Divas With A Purpose.
She focuses on sharing resources for being purposely productive; setting personal and professional goals and achieving them through daily action; and successfully running a business while focusing on your mental health. Michelle is a full-time entrepreneur who specializes in teaching female entrepreneurs how to show up consistently in their business – online and off.