What chronic illness looks like behind closed doors

Many chronic illnesses are described as “invisible illnesses.” Depression, anxiety, chronic fatigue syndrome, Lyme disease, fibromyalgia, autoimmune disease… they all have one thing in common: most of their symptoms are invisible to outsiders.

Like many others with chronic illness, I have become very good at hiding how I really feel. Since I don’t generally walk around with a sign saying, “I have chronic illness,” my friends, family, colleagues and acquaintances (and that miserable lady in the post office who makes me want to cry on a bad day), would be forgiven for thinking I’m perfectly healthy.

Before I got sick, I think I’d have found this concept hard to understand. I’d have assumed that no one could possibly hide how they’re really feeling all the time, and that I’d notice if someone was really that ill. Now, of course, I know different.

When my sickness level is a nine or ten out of 10, I stay at home. I call in sick from work or work from home, I cancel my social plans, and I skip my yoga class. No one sees the really sick version of me. Well, no one except my parents and my boyfriend (lucky them).

When my sickness level is a seven or eight out of 10, I do minimal activities. I might head into the office for a few hours and leave at lunchtime. I might pop to the shop. But that’s about it. I’m likely to do these things with plenty of painkillers, and I’ll avoid speaking to anyone. If I seem quiet or grumpy or stressed, it’s probably just that I’m having a seven or eight kind of day, and I am just about able to make it to the office but I feel too sick for conversation.

When I’m at a five or six sickness level, I’ll do most of my usual activities. I’ll do a whole day at work, I’ll meet my friends for coffee if we’ve made prior arrangements. I do these things feeling very tired, and a little fluey, but it’s manageable and I’m normally able to hold a conversation and keep a smile on my face. Anything below a five on the sickness level is rare, but on the occasional level two/three/four days, I’ll be on top of the world! I’ll be the first one in the office and the last one to leave, I’ll be joking and laughing and making conversation. I’ll be at yoga and then I’ll meet a friend for dinner. I’ll be, for all intents and purposes, normal.

So if you see me and you think I look quite healthy, either it’s a particularly good day, or it is a moderately good day and I am just about holding it together. The true sick version of me rarely shows her face, and if I did, I really think my friends and colleagues would be horrified.

So what does chronic illness really look like? On those days when I wake up and can barely make it out of bed, or when I walk through the front door after a whole day spent in the office wondering how on earth I’m going to make it til 5 p.m… What does it look like, behind closed doors?

There are normally pyjamas, dressing gowns and blankets involved. I will often have my head in my mobile phone or on my laptop, researching this illness, trying to find the right balance of self-educating without causing panic and upset. There will be no makeup, no brushed hair, no nice clothes. There are lots of cups of tea. There may be a nice dinner if I feel able to make something, or if my boyfriend is around to cook, otherwise, there will be takeaway or leftovers or whatever scraps I can find in the fridge. There are few smiles, few jokes, few memories to be made. There are tears. Sometimes there are a couple of tears that can be wiped away and pushed to one side. Sometimes there are inconsolable sobs as the enormity of how terrible I feel and how tired I am of feeling terrible, comes to the forefront.

Behind closed doors, chronic illness is ugly. It is unwashed, undressed, it is grubby. It is lonely and isolating. It is both stressful and boring at the same time. Sometimes I feel like a fraud for writing about how hard chronic illness is, about how sick I feel, because I know that for anyone looking from the outside in, I look like a normal, happy, healthy young woman. Please know that I hide the truth. Please know that looks can be deceiving. Please know that behind closed doors, chronic illness really is an ugly old beast.

 

Originally published on The Mighty:

https://themighty.com/2017/03/what-living-invisible-illness-is-like-what-people-dont-know/

2 thoughts on “What chronic illness looks like behind closed doors

  1. Hi,

    A few moments ago I stumbled across one of your older posts and I commented there. So I won’t repeat the comment, but some of what I said there is relevant (i.e. what illnesses I have).

    First, you are not alone: the way you describe how you cope with the varying degrees of pain and distress caused by your symptoms is very similar to how I cope with my neuropathy. Only my closest friends know what conditions I have and the truth about their effect on my life. Please don’t feel like a fraud.

    Secondly, your post highlights what is the singularly most frustrating aspect of living with chronic and invisible illness. That is, the psychic and social isolation. Writing is wonderful: you can reach out to people, enter into conversation, create an entire world …

    My experience: I’ve tried looking for peripheral neuropathy support groups locally, but there are none. There’s not any great national support, either. It seems that support is given via disease category. For example, MS societies give support to their members who suffer neuropathic symptoms. But I could not contribute to their forums, because I do not have MS, even though I am experiencing exactly the same symptoms as some members describe. This is the version of isolation that frustrates me. (I definitely need to resurrect my blog!)

    After nearly 10 years of dealing with my neuropathy (which has increasingly worsened to the point where I must take neurological drugs daily), I’ve developed a deep sense of alienation from the world. I can’t trust my body or my mind: both are affected by my illnesses. But I’ve not quite succumbed—I remain an optimist and a lover of simple pleasures. I really like your quote about courage being quiet. That’s the sort of courage you and I and all the others out there with invisible illnesses require.

    Like

    • Hi Simone
      Thanks so much for your comments, it always fills me with such joy when I hear from readers, especially those with chronic illness – it is a wonderful way to connect with people you would never get to meet in real life!

      Sorry to hear of your own health difficulties. You’re absolutely right, online networks are fantastic for sharing, connecting, reaching out. It is what I love most about blogging. I can completely relate to your ‘disease category’ comment; I was undiagnosed for many years and I was a member of several fb groups for various conditions I was told I might have, but never really fit into any of them, I found it extremely isolating. Since being diagnosed with Lyme and joining a support group, I have felt much less isolated in that way. Maybe you should start your own support group for your condition, I bet there are lots of other people who find the same problem.

      Re non-dairy milks; I totally understand the soy dilemma! I try to avoid soy for several reasons but mainly because it has hormone-disrupting properties and I have hormone issues anyway, but I find it by far the best dairy alternative for tea and as you say, is so cheap! I tend to avoid milk & milk substitutes altogether now and have learned to live without them! x

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s