What I Wish I Knew When I Was Diagnosed With Chronic Fatigue Syndrome

This is my first foray into the very public act of writing about and sharing a very personal struggle.

In my case, it’s about the struggle of living with a chronic illness (myalgic encephalomyelitis, or chronic fatigue syndrome), which I have had for over 17 months now. I am not going to expound at length on the day-to-day struggle of living with chronic illness. Many of my peers have done so before, in both eloquent and excruciatingly frank ways. Needless to say, many accounts have had me sobbing, mouthing “Yes! OMG yes!” to their heartrending descriptions of the daily battles, the pain, and of the relentless task of simply keeping on with a chronic illness. 

Here, instead, I would like to share a couple of things that I would tell my newly-diagnosed self — a few pearls of “wisdom” I now feel sufficiently experienced to share:

People will still love you. Even when you don’t.

As you succumb to a chronic illness you may begin to lose the ability to undertake those activities and accomplishments that once formed your identity. No more working full-time, and then at all. No more dinners out, going to gigs, markets and festivals. No energy and debilitating fatigue “crashes” makes it harder to spend long amounts of time with people, including your family and those you love. The loss of self-esteem that comes with these losses can be brutal. But, as your self-love may take a battering, remember that those around you love you — and will continue to love you — for who you are, not what you do. You are the sum of your (gloriously messy) parts, not the sum of your achievements. And just because your friends don’t come around as often, or you don’t spend long hours at a family lunch, doesn’t mean they aren’t thinking about you.

You are more than your body.

Most chronic illnesses aren’t characterized by a rush of vitality and the immediate development of firm, glowing limbs — in fact the very opposite. You may find your physical body slowly wasting, as you lose the ability to exercise, dance, ride a bike, walk up stairs, or even physically care for yourself. When merely showering requires a post-lie down to recover (don’t even get me started on hair washing days), it doesn’t take long before you are inhabiting an unrecognizable body. Cut yourself some slack. A wobbly tummy and more rotund thighs do not mean you have lost your intellectual vitality. The loss of your core muscles do not represent a loss of vigor. The trick to remember is that you are still you — fierce, independent, still ready to grab life by the — let’s be honest, rather more plump — balls.

You are strong, resilient. You are a warrior.

Let’s face it, getting out of bed can be hard for everyone sometimes. For the chronically ill, it’s frequently not the most appealing or even possible option. Neither is staying in bed, where you are faced with unending boredom, chronic pain and the sometimes unrelenting maelstrom of your thoughts. Yet thousands of us do it. We go to part-time jobs, countless doctors’ appointments and hospital visits. We do it despite the fatigue, the pain, the anxiety and the countless other symptoms that form our delightfully varied debilitating diseases. We do it in the face of a world which doesn’t fully understand what we face, and frankly, doesn’t seem to really care to. Your sense of optimism will become your greatest weapon in this time, propelling you out of bed, even on the crappy days. Remember to always be grateful for this.

You + the internet does not equal doctor.

Don’t Google-doctor. Just don’t. Even at 3 a.m. Particularly at 3 a.m. The worry and ensuing sleepless night are not worth it. Take some deep breaths, read a book, meditate, get some hot milk — whatever helps the “painsomnia,” and try to go back to sleep. Any pain, abnormal growth, additional disease or third limb will look a lot less terrifying in the morning light. And on that note, do get educated. While there are many wonderful and motivated medical professionals out there, there are many who will not take you seriously, will not adequately refer you, or will not go that extra mile (or centimeter) to ensure that you receive the best possible care. At the end of the day it is up to you to direct your own healthcare and/or recovery. Be open to options, be curious, be hopeful. If it doesn’t kill you, it might just make you stronger (and stand a little taller…).

A community of support exists.

It can be terrifyingly isolating living with a chronic illness. Not just in the literal sense — the regular inability to get out of bed and dwindling social interactions, but also experiencing something that most people around you cannot fully conceive of, even if they try. But other chronic illness sufferers can, and do appreciate your experience, and they are willing to listen, empathize, and give you that little boost when you need it. Many support groups meet regularly, or as often as tired, sore bodies will allow, but if that option is unavailable to you, there is the internet. Email, twitter, Instagram — reach out and you will be surprised at the vibrant, strong and courageous people out there who are not taking it lying down (well, metaphorically at least). 

Crying is OK. But not every day.

Crying is the world’s best free therapy. Ensure to book in a regular cry, whether the sobbing, woe-is-me flood, the tearing-up-because-movies/cats on the internet type, the contained releasing of the week’s tension variety, or the pre-panic-attack-entire-body-keening, crying has kept me sane. It has allowed me to express the hurt my body, my emotions and my soul is feeling. It is my form of expression when no words will suffice. Remember, however, that crying every day is not helpful. It is tempting to slip into the deep dark hole of self-pity, because there is no one in there to hold you accountable or say, “Hey! Have some perspective, you jerk! You are alive. Check out all these awesome things in your life! Suck it up, and get on with it.” Sometimes you need that girl to wipe away the tears.

You are enough. Even broken, tired, in pain, scared, feeling lacking. You are still enough, and always will be.

In fact, these are all things I would and do still tell myself. The pretty crappy thing about a chronic illness is that it is just that — always there. You might be constantly exhausted, often in pain, with nausea, brain fog, poor concentration and debilitating dizziness thrown in for good measure, but you are still you, and you still deserve love and kindness and hugs and the odd belly laugh. The people around you know this, and they will be there for you if you ask them. So your job is to remember and to ask them. After all, everyone can get behind a good cat on the internet, healthy or not.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. Check out our Submit a Story page for more about our submission guidelines.