When you have an invisible illness like ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), it is difficult to know how much you should explain and to whom. Some people choose to keep their illness secret (often to protect their jobs). Others, myself included, tend more toward openness, but there are still questions about whom you tell, how and when you tell them, and what you say.
One of my first encounters with these challenges came shortly after my ME/CFS diagnosis in 2003. I had been horribly ill for an entire year and had finally found a new doctor who recognized that I had ME/CFS. I was struggling to come to terms with my new status — I was now chronically ill.
Around that time, my husband and I attended my 20-year high school reunion. Although I was excited to reconnect with old friends (this was before Facebook!), I was also very nervous. A couple of my closest friends whom I’d stayed in touch with knew about my illness, but most of my old classmates did not. I found it very awkward when someone I hadn’t seen in 20 years said, “So, what have you been up to?”
So what did I say? Everyone else was chatting about careers, vacations, etc. It just didn’t feel right to say, “I spent the past year lying on the couch horribly ill.” It was a festive occasion, and I didn’t want to bring people down. On the other hand, it felt like I was lying to smile and pretend everything was OK (plus, I had to sit a lot, couldn’t drink, and had to leave early). At the time, I didn’t even yet feel comfortable myself with my diagnosis, and I found it very difficult to explain to others. I ended up just stumbling through the evening, explaining to closer friends, sticking to safe subjects like my kids with people I knew less well, and feeling uncomfortable about the whole thing.
Now, 12 years later, I am much more at ease with my illness and with explaining it to people. I am looking for understanding, not pity, so what I say sets the tone. Although these are very personal decisions and everyone is different, here are some guidelines I have come up with for myself that have worked well:
What to Say to Others About Your Chronic Illness
1. Close Family and Friends
Those closest to me knew I’d been sick with some mystery illness for over a year, so they were eager to learn of my diagnosis. I sent out a group e-mail to my family and closest friends, explaining that I had a diagnosis but it was a complicated illness, so e-mail was the best way to explain it to everyone at once. Some of the points I included:
- The various names for the illness: CFS, ME, and at the time, CFIDS.
- It is an immune system disorder and has some similar symptoms to MS, lupus, and other autoimmune diseases.
- My main ME/CFS symptoms include: post-exertional relapses, sleep dysfunction, extreme fatigue, flu-like aches, and recurring sore throats.
- Cause unknown, no cure yet, but there are some treatments.
- I would need to change my lifestyle: restrict activity, stay within my limits, don’t overdo, rest more, avoid stress.
- Resources for anyone who wanted to know more – links to websites and recommendation of a book I’d read.
- I thanked everyone for their concern and support since I’d gotten sick.
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I received a lot of positive, supportive responses from friends, and many of them thanked me for explaining. That e-mail gave me a foundation for moving forward. The people closest to me now understood (to some degree) what I was dealing with and knew to expect that I would have to be careful not to overdo.
2. Casual Friends or Acquaintances
It gets more difficult with people you don’t see often (as in my reunion) or those whom you aren’t as close to. So, what do you say when you run into the parent of one of your kid’s friends, an old friend you haven’t seen in years, or to the person asking you to volunteer for their charity event? If they ask how I’ve been, or seem interested in catching up, then I will say something like, “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.”
Whether I explain more or not depends on the person’s response: glazed eyes and silence and I’ll just change the subject. If someone is truly interested, though, I will tell them more or answer their questions. I might explain how the illness has affected me (briefly) or that I can’t stand for long because my blood pressure drops and my heart rate goes up (these are measurable things easily understood by anyone). I try to be very matter-of-fact and positive, to put the other person at ease.
Many people, after hearing that vague first line, will ask the name of the illness. Always a tough one with ME/CFS! I will usually say something like, “Here in the U.S., it is often called chronic fatigue syndrome, but in the rest of the world, it is known as myalgic encephalomyelitis.” Why even mention the dreaded CFS name? As much as I hate it, it has become somewhat recognizable in the past few years here. By explaining it and using the name, I am helping to educate people that it is a serious disease and not as trivial as it sounds.
If I am responding to a specific request, say, to volunteer for a PTA function or participate in a charity run or even to come to a doctor’s appointment in the afternoon, I will explain what is pertinent to the request. I might say, “I have a chronic illness, and I need to nap in the afternoon” or “ I have a chronic immune disorder and have very low stamina” (or can’t stand for long, can’t exercise, etc.).
It has taken me many years to become comfortable with these kinds of situations – who to tell, how and when, and how much to say. Of course, there are still some awkward moments here and there, but it is much easier now that I am accustomed to life with a chronic illness myself. Having some go-to phrases and explanations that I can rely on has really helped. When the people in my life understand my limits, it is a whole lot easier and more comfortable for both me and for them.
What do you tell others?
This article was first published on ProHealth.com on October 31, 2015 and was updated on May 14 , 2020.
Suzan Jackson is a freelance writer who has had ME/CFS for 13 years. Both of her sons also got ME/CFS, but one is now fully recovered after 10 years of illness and the other is in college. She writes two blogs: Learning to Live with ME/CFS (with an emphasis on LIVE!) and Book By Book.