The Isolation That Comes With Feeling 'Embarrassed' by Your Chronic Illness

It’s no secret that there are a lot of “embarrassing” symptoms associated in living with any chronic illness. Those things we shouldn’t really discuss in so-called polite society. We don’t want to mention our explosive bowel movements during a high-class dinner party for example, and it’s apparently “frowned upon” to remark on vomiting profusely during a funeral service. Hard to keep track of these social niceties, isn’t it? A minefield one might say. (Coincidentally a place where it’s also “inappropriate” to chat about bunions).

Feeling your condition is “embarrassing” places a cloak of shame around patients. It makes us feel we shouldn’t talk about certain things for fear of upsetting or offending others. Funny that, because fear usually involves danger and uncertainty, and that’s something chronically ill patients live with daily. Fear is not hearing about the frequency of someone’s bowel movements.

Considering all this then, it’s understandable that having all this apparent shame surrounding conditions out with our control, it can often be hard to discuss our illness openly and honestly. Sometimes even with those closest to us.

I’ve been thinking a lot about much of our lives as perma-patients, is spent in waiting for the “right time.” The right time to talk about how unwell we are, and the worry around how those we love may react. The right time to ask the burning questions we need to ask our doctor, and the associated hornets’ nest of other potential problems that may come from alluding to a new symptom. The right time to admit we feel afraid. The right time to confess we feel alone.

Loneliness is an incredibly common aside of chronic illness. This can be felt if we live alone, with few friends, or if we are the life and soul of the party with a houseful of other humans. This can occur over time or sometimes overnight. Time moves slowly when you have a chronic illness, and isolation can creep up on us quicker than we might be emotionally prepared to handle.

It can be easier than we might think to become isolated, because when we are at our worst we are forced to spend time away from those we love. Whether that be as an in-patient in hospital, or just trapped in our own bed. (“Trapped in bed” might sound thrilling to those of you with “50 Shades of Grey” stored provocatively in your Kindle, but we are not talking about anything of the sort here; the only “grey” thing here is probably our complexion).

Feeling unwell and canceling plans is also infuriating and upsetting. It does, however, allow for plenty of time to overthink every detail of our lives. Especially
when we can’t sleep; lying awake through the night is prime-time to relay every
detail of that embarrassing thing we said to that cute barman in 2002, or how much fun everyone else in the world is having without us and our sickly misery-laden patter. Of course, none of this is logical or helpful in anyway, but nevertheless it persists.

We will often avoid seeing those we love because we feel hideous, we are too weak to do anything, we are feeling down, we are just plain exhausted, both mentally and physically. We won’t want to be a party-pooper (pardon the unintentional IBD pun) and feel that we have little to offer in way of conversation due to our having been up close and personal with nothing more than our duvet for several days/weeks.

But really, most, if not all of this is in our heads. We worry about what is going on in the “real world” because we feel a bit imprisoned in our sick one. We assume everything, and everyone is “better” on the outside and that we are alone in our plight. We don’t want to complain, because who wants to hear that?! And life, and everyone outside, has moved on without us. Minutes become years when you are staring at a hospital ceiling. Time passes slower than my bowels when I’ve eaten steak (OMG I went there).

But the truth is, illness and all, we are valued. We are loved, and we are missed.
The isolation we feel is a symptom of our illness in the same way pain and nausea is. It’s exacerbated by stress and the flames of our self-doubt can be easily fanned by relentlessly strolling social media and seeing the picture-perfect lives of everyone else on the outside of our tiny world. So if you feel alone, have faith that it will pass. That those who care for you are waiting patiently to hug you, and love you and talk to you about anything and everything. Bowel movements and all.