What your friend with a dynamic disability wishes you knew
Dynamic disability looks different every day and impacts people differently.
It can be tricky to navigate the topic of dynamic disability, so if you don’t have the energy to explain it this holiday season, just send your loved ones this post! With love from your chronically ill friend.
What is a dynamic disability?
‘Dynamic disability’ refers to disabilities that fluctuate, meaning a person’s abilities, symptoms, and energy levels can vary from day to day or even within the same day. Our capacity can be influenced by many factors including stress, activity levels, or environmental conditions.
Some conditions that are considered dynamic disabilities include ME/CFS, Ehlers-Danlos Syndrome, POTS, Fibromyalgia, Endometriosis, Lupus or MCAS just to name a few.
We get a lot of comments & misconceptions about our experience so let’s break down a few here:
“You don’t look sick…”
Symptoms aren’t always visible and it’s not possible to judge how healthy someone is from how they look visually. Most of the time, our conditions are internal so you will never be able to see how much we are impacted. Plus, 'looking great' or appearing 'well' can take a lot of effort and will often result in a crash or flare.
“You’re still sick? I thought you were getting better!”
Nope, it’s chronic illness! Every day is different, but we won’t recover in the same way that someone with an acute illness might. We will be impacted by our conditions in one way or another for the rest of our lives so just because you saw us on a good day, doesn’t mean we’re cured.
“Why have I seen you do [XYZ] before and now you ‘can’t’?”
The impact of dynamic disability is varied and can be difficult to predict. Often, pushing through one task may mean losing the ability to do another. For example, I could clean the house, but I might have to spend the next three days recovering in bed as a result.
When you live with dynamic disability, every activity has a consequence and we may end up borrowing energy from the future. Things you may not even think about- like taking a shower or walking up stairs- can take an enormous toll on your chronically ill friend. If you see us doing something, it’s likely that we’re just “pushing through” because we don’t have another option.
Living with dynamic disability often feels like waking up with your battery charged to a different percentage
“You’re too young/not disabled enough to be using a mobility aid!”
Tell that to my disability, Susan! Disability does not discriminate and we are all likely to end up disabled at some point. For some of us, that just happens a lot earlier than others!
People commonly believe that the only reason someone would use a mobility aid is because they have no use of their limbs (eg. paralysis or quadriplegia). This is a ‘static disability’ and is considered permanent due to its nature, history, severity and predictability. Often this misunderstanding prevents people with dynamic disability from using a mobility aid, especially if they are afraid people will accuse them of exaggerating or lying about their condition.
Mobility aids can help with energy conservation and physical strain so they may allow us to attend events or do things that we wouldn’t otherwise be able to do. Aids can be confusing for people who don’t use them, especially if we may use them for one activity and not another, but we use them because it greatly improves our quality of life or ability to function.
Using different mobility aids are not always indicative of symptom severity or how “well” someone is feeling either. For example, even though someone might usually use a wheelchair or walker, they might opt to use a cane or nothing at all if the location they’re going to is not accessible. This doesn’t mean they’re feeling better or worse!
Know that when you see someone using a mobility aid, they are doing what is best for their body at that time. It is not for you to decide how a disabled person supports themselves.
People with dynamic disability may use different aids depending on their needs at the time
“I miss the old you” or “it feels like you don’t want to hang out anymore.”
Please don’t tell someone this. This is really hurtful. Trust me when I say no one misses how things used to be more than we do! We’re well aware that chronic illness is a bummer.
Coming to terms with chronic illness is a grieving process. We constantly grieve our old life and abilities along with the plans we had for our future. The unpredictability of dynamic disabilities can be emotionally draining, as it’s difficult to plan ahead, commit to goals, or feel understood. We love you and we miss you too but we don’t have the luxury of things going back to the way they used to be. We need to feel supported, not shamed for our current capacity or circumstances.
“Have you tried [unsolicited advice]?”
Probably! We know that advice is well-intentioned, but it can sometimes feel frustrating or invalidating, especially when it’s unsolicited. Often, it’s because it’s a) coming from an able-bodied person, b) something we’ve heard a hundred times (special mention to yoga or naturopathy) or c) doesn’t take our individual circumstances into consideration. Ask yourself, would you offer these suggestions to someone with a static disability or would you trust that they are handling it, along with their doctors?
Sometimes it feels like being told that getting better is a personal responsibility or that “if you just tried hard enough you’d be able to recover.” Realistically, we’re already doing as much as we can to improve our situation but there’s a lot outside our control. Plus, there’s often a financial barrier to receiving care so even if something would help, we can’t access it because we can’t afford to!
“What can I do to help?”
This is the sweetest thing you could say to someone who is struggling with their health! If you want to make a practical and genuine difference, let your friend know that you’re there for them and ask them to tell you what they need in order to lessen the burden. They will be so grateful if you offer something like a lift to an appointment, a meal cooked or their washing done. We’d love to repay the favour for you one day! But without adequate societal supports for disability, we really rely on our village to support us.
Know that we understand that dynamic disability can be confusing – we’re often confused by it too! If you want to learn more, approach the topic with curiosity and compassion rather than suspicion and aversion. It’s not rude to ask questions, but it’s rude to make assumptions.
Written by Kayley Woods, 2024
Graphic designer & artist living with dynamic disability
Follow me on Instagram and TikTok
