Pain, lethargy & anxiety; disability hooks in harder than you know. The first essay in a series on invisible illness.
By Rebecca Lee Williams
Peak hour. There are no available seats on the bus. My chest tightens as I realise I’ll have to stand for the entire 30-minute trip home. I reach into my handbag to grab my water, and again to grab painkillers.
I dragged myself out of bed at 11am after a restless night. It took a couple of hours to get ready; my knees and ankles had swollen up overnight and walking was difficult. I had plans to meet my friend at 1pm for lunch, but texted her to say I was running late. I didn’t want to bail on her again; this was the third time we had arranged to meet, and I hadn’t seen her in months.
She asked what I’d been up to: “Oh, not much, the usual.” What else was I supposed to say? It’s true, I haven’t been doing anything out of the ordinary, for me at least. Medical appointments, lots of time in bed, not working. But I’d been reading a lot, and writing when able. She told me about her new job, her plans to travel next year.
She wanted to buy a present for her partner’s birthday next week and asked if I’d help shop for one. Perhaps I should’ve said no. I was still sore, and growing painfully tired. But I was enjoying her company and, after being housebound all week, I grabbed the opportunity to continue being social and out of the confines of home.
By the time I reached the bus stop my joints were throbbing and I was dreaming of my couch. I needed to sit, maybe lie down for a bit. “I can sit down on the bus, and it’s only a 5-minute walk home when I get off.” But there are no free seats. And I’m not about to ask someone for theirs. That would be rude.
What do you imagine when you see the word “disabled”? A paraplegic in a wheelchair? A car-accident victim with missing limbs? A blind man with a cane?
Would you ever consider the girl you met in the pub last weekend, the co-worker in the next office, or the fellow passenger on the bus, to be “disabled”? Chances are they all look “normal”, yet what if they each told you they had a disability? Would you believe them?
We humans are visual creatures; we take what we see on face value, and make judgments accordingly. For the most part, we can trust that our judgments will be proven correct. But sometimes we get it wrong. We forget that some things can exist and not be seen.
When we think of what it means to be disabled, we often think of the visible signs of disability: wheelchairs, limps, seeing-eye dogs. We fail to consider that not all disabilities are visible and that, in fact, many are invisible.
I present as a physically-capable 29-year-old woman. I’m not in a wheelchair, I don’t use crutches or other medical aids, nor do I have any obvious external symptoms. Yet, by definition, I am disabled.
The reality is I suffer from a plethora of chronic health conditions—over a dozen in total—which produce a variety of symptoms, and leave me feeling anything but “normal”. These conditions are what many are now calling “invisible illnesses”.
At age 14, I was diagnosed with my primary condition, Fibromyalgia—defined by the Mayo Clinic as “a disorder characteri[s]ed by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues”. I have also been diagnosed with related and unrelated conditions including Chronic Fatigue Syndrome, Endometriosis, Major Depression and Generalised Anxiety Disorder. On any given day (or indeed any given minute), I may be sore, low in energy, having trouble concentrating, feeling low or anxious, but unless I told you I was ailing, you’d be none-the-wiser.
On the whole I’m thankful that I’m able to “pass” as a “normal”, “functional” person. It’s a freedom that many with disabilities do not enjoy. I’m lucky that I can go outside without fear of being stared at, asked an ill-informed question, or worse still, harassed because of my disabilities. I’m also able to be confident that when I meet someone new, they will not recognise me as being disabled or unwell. I savour moments like this, when I appear to be just like “everybody else”.
And yet, there are times I wish people could recognise that I’m ill; when I wish how I’m feeling on the inside would manifest into an external symptom for the world to see. I say that not to trivialise the experiences of people with visible disabilities, nor do I wish to appear to be seeking attention. But I do wonder, if my disabilities were noticeable, would people be more sympathetic to my experience? If people with an invisible illness were suddenly visibly ill, would others treat them differently?
I struggle to effectively communicate what it’s like to suffer from invisible illnesses, and what it is I’m feeling. It’s hard to articulate this to my family and friends, and even harder to explain to strangers.
All aspects of my life are affected by my conditions—from significant long-term goals: holding down employment, maintaining friendships, starting romantic relationships; to my everyday routine: getting out of bed, showering, eating, walking, sleeping—all of which can prove a struggle due to pain, lethargy, or anxiety. Pain is a constant in my life; it’s merely a question of how “bad” or “manageable” the pain is. I don’t know how I’m going to feel at any given moment, and keeping to a schedule of any kind proves challenging.
“I’m really sorry, but do you think we could meet up next weekend instead? I’m not feeling great, I’m not going to be up to making it tonight. I’ve been looking forward to it all week. Sorry. Hope you understand.”
Oh god, he’s going to think I’m piking on him. Should I tell him this happens a lot, that I have to postpone plans all the time? He might think I’m making excuses. Should I tell him about my illnesses? No, that’s too much. It might scare him. “Hey, I have conditions that stop me from being‘normal’”. Bad idea. When do I tell him? Should I tell him? Maybe I shouldn’t bring it up at all. Am I even going to be able to make it out next weekend?
“No worries. Hope you feel better soon.”
If only it were that simple.
Try explaining to an employer that you can’t come into work because you literally can’t get out of bed, without being seen as lazy, incapable or incompetent. Or telling a potential love interest that you’re too sick to keep a date, without feeling like you’re oversharing, “high-maintenance” or fobbing them off. It’s taken me years to come to terms with the nature of my conditions; it’s hard to explain their complexities in a call or text, and it’s unfair to expect someone to grasp your experience quickly and easily.
How can people who suffer from invisible illnesses bring awareness to their disabilities and get the support they need? And what can people do to provide support?
Despite some negative experiences, I’ve come to believe that being open is key. If you suffer from an invisible illness, try your best to air your struggles and frustrations with those you trust. It’s up to you as to when or if you tell someone about your conditions. If someone is dismissive or ill-informed, challenge their opinion. If they don’t change their tune, limit contact; unsupportive people can cause further stress, and your illness likely provides enough of that already.
If you know someone who suffers from an invisible illness (or indeed any disability), don’t be afraid to ask questions, but use common sense. Illness can be a sensitive topic. A sufferer may be anxious that you won’t understand. They may be feeling too unwell to offer a comprehensive description of what it is they go through every day.
Unless you’re medically trained, or suffer from chronic illness yourself, don’t suggest a particular treatment or medication—chances are they’ve already tried it, or it may not be right for them. Leave that advice to medical professionals. Don’t underestimate the amount of pain someone is in, and don’t make comparisons to your own troubles; unless you have experienced a particular illness firsthand, it’s unlikely you could fathom its realities. Don’t assume a person is lazy or unreliable if they can’t keep plans; many illnesses are unpredictable and flare-ups can occur due to a variety of reasons (exertion, weather, stress) or for no reason at all, and sometimes with zero notice.
Most importantly, lend an ear or a shoulder. What people with invisible illnesses crave most is to be heard and believed. Don’t trust that because someone looks well, that they are well. Looks can be deceiving.
“Maybe try going for a walk? You haven’t left the house in days, it’ll do you good.”
“Yeah, I probably should, but I’m not feeling up to it.”
I know she means well, but that’s the last thing I feel like doing. It’s an effort just to walk from bed to the bathroom.
“You really should. I mean, it’s not healthy, staying inside for solong. You should get some exercise. Have you tried yoga? I read an article about yoga being good for relieving pain. I go twice a week, you should come. It helped after I hurt my ankle at netball.”
Just bite your tongue. She’s only trying to help. She doesn’t know you’ve tried and found it too difficult and painful.
“Oh, I’ve tried yoga, it’s a bit hard for me to manage the poses. But I try to stretch every day.”
“What about pilates? There’s a studio up the road that I hear is really good.”
Breathe. Just breathe.