When You Have to Defend Your Invisible Illness

When you’re “invisibly ill,” people tend to default to thinking you’re complaining for one of three reasons:

1. You’re looking for attention.

2. You’ve done it to yourself.

3. You’re a hypochondriac who has self-diagnosed with some unheard of illness that you can’t prove.

Each of these assumptions are not only offensive, but really hurtful, especially when they come from people who are supposed to love and care about you.

Time and time again, I’ve had to defend myself against unhelpful comments like:

“But you don’t look sick.”

“Maybe it’s your diet?”

“Perhaps you should try a new sleeping pattern.”

“Get some exercise!”

“Oh, I used to get that sometimes too. Try eating more ‘insert ridiculous health food recommendation here.’

And the best one, “Maybe don’t go out so much?” – which is ironic because I’ve actually had to start turning down most social events I’m invited to, due to my illness.

I’m 26 years old and I’ve been suffering from worsening symptoms chronic fatigue syndrome (CFS) over the last nine to 12 months, which has now after many inconclusive tests finally been formally diagnosed by a team of National Health Service CFS specialists as “post viral fatigue” (PVF) – for the meantime at least.

If you don’t know much about CFS, you’re probably thinking, “Chronic fatigue? So you’re just really tired all of the time?” Which, this is what I would have thought before this happened to me, but that doesn’t even start to explain it.

I had a pretty bad week when I had that virus where I experienced an intense pain, congestion, and flu-like sort of infection back in February. And since, I’ve suffered from bouts of overwhelming exhaustion, dizziness, memory lapses (brain fog), and a pain I can only describe as a dull ache, crossed with a tingly, almost pins and needles type nerve pain, in my legs and hips. This usually happens when I’ve done too much activity, but I have good and bad days, even “good” weeks if I’m lucky, but I never feel refreshed after a full nights sleep and my pain is almost constant; though I’ve learned on good days to sort of tune it out.

PVF is a hopeful diagnosis as it’s only short term, however if I’m still having problems in 18 months, I’d be classed as having CFS/ME, which is incurable, and there’s no recommended medication to help yet. At the moment I’m getting by seeing an occupational therapist for the emotional issues my illness has caused, but so far I don’t have any help with the pain or physical strain of being exhausted most of the week.

Since I noticeably got ill, I’ve had to change a lot, but whenever I can I try to keep up with seeing family and friends. The problem is, it’s often bittersweet.

A piece of fabric with hurtful comments sewn in about people's invisible illnesses.

I love spending time socializing because for the majority of the week (when I’m not struggling through work), I don’t really see anyone as I’m trying to “save my spoons” so I don’t crash at work. When I have a weekend where I feel OK, I take advantage. It’s great until someone makes a comment that they saw on my social media accounts that I was out at the weekend which “must be why I’m tired.” I’ve even had someone comment that perhaps I shouldn’t broadcast what I do online as people will assume I’m lying when I’m too ill to do something in the following days or weeks.

Are they not a normal person doing the same as me on a weekend, but managing to shake it off by the next day? The thing is, people don’t see that I keep Sundays free every week to ensure I don’t wear myself out for Monday. I even book Mondays as a holiday if I’ve got a particularly busy weekend planned.

lauren ward before and after makeup

People can’t understand invisible illnesses that they’ve never really heard of, and I generally don’t look “ill,” but some days if I’m particularly in pain or shattered, I look very down –because let’s be honest, chronic illnesses really can play on your mental health and has done so for me for some months now.

Sometimes I wish I had any other visible illness that people could sympathize with, which is awful and I shouldn’t wish that on myself… but people’s bad opinions of me are one of the hardest parts of all of this. Why do I have to defend myself? Bodies malfunction, whether physically or mentally, and people are so reluctant to believe something they don’t understand or can’t see.

I’m not a liar, I’m struggling through the hardest thing I’ve ever had to deal with.

Follow this journey on Instagram at @exhaustedme.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: AliSta21

Find this story helpful? Share it with someone you care about.

Related to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Two women working in the office.

Are You Selling Yourself Short in the Work Place Because of Your Illness?

The thing about chronic illness is that it doesn’t just rob you of your physical and mental abilities. It robs you of a little piece of you on the inside too, and that’s the part of it that is difficult to explain or put into words for other people. The whole focus of your life changes, [...]
screenshot of cdc me/cfs webpage

CDC Quietly Removes Two Controversial ME/CFS Treatments From Its Website

The Centers for Disease Control (CDC) has quietly removed two controversial and highly criticized treatments for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) from its website. In early July, mentions of graded exercise therapy (GET) and cognitive behavioral therapy (CBT) were removed from the “treatment” portion of the CDC’s CFS/ME page. The move was not widely announced; [...]
A photo of a woman with her forehead resting on her face.

What I Wish Others Understood About Life With Chronic Fatigue Syndrome

I don’t expect you to understand my daily struggle. How reaching the bare minimum is exhausting. How trying in itself can be so tiring, plus the failure to reach the standards the world has set. Having chronic conditions can be one of the loneliest journeys to tread. You tread on a road full of lack of reason, [...]
jennifer brea in unrest documentary

Jennifer Brea Directs and Films 'Unrest,' a Documentary About Her Chronic Fatigue Syndrome

Jennifer Brea had been bedbound due to chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS) for a few weeks when she first picked up her iPhone and started filming herself. A lifelong writer and reader who could no longer do either, Brea turned to her “video diary” as an outlet for her fear and grief. But during a medical appointment, [...]