'I have a dynamic disability and here's what I wish people understood about it'
A woman has shared the things she wishes people knew about her dynamic disability, and others shared that they feel the same, but never had the words to explain it
A woman has opened up about what she wishes others understood about her dynamic disability. Kit, who posts on TikTok as @moonlit_kit, shared that she has Postural orthostatic tachycardia syndrome (POTS), Hypermobile EDS (hEDS), Mast Cell Activation Syndrome (MCAS), and "a multitude of co-morbidities".
She also explained that she has a dynamic disability, which "is a condition where the severity, symptoms, and impact fluctuate over time". She said that these are "unlike static disabilities, where the impacts and symptoms are more consistent," with dynamic disabilities, "it can be really hard to predict how somebody's going to feel." This can make planning around the disability difficult.
Kit shared that "fluctuations" in the way a person with a dynamic disability feels can happen "day by day" or even "hour by hour".
She said: "Unfortunately, that fluctuation can lead to a lot of undue stigma as people don't understand that those with dynamic disabilities need different levels of support on different days".
Ai Arthritis shares: "A dynamic disability refers to a condition or impairment that fluctuates in severity and impact over time.
"Unlike a static disability, such as amputation or paralysis, which remains constant, a dynamic disability may have periods of remission or exacerbation. This can make it challenging for individuals with dynamic disabilities to predict and manage their symptoms, as the level of impairment can change unexpectedly".
They also explain that you should "consider this the next time you see someone with a mobility aid one day and then without it another time," highlighting that "they are not faking their disability, it just fluctuates".
It's the same for those with invisible disabilities, as they can be able to do "something one day and then struggle to do it the next".
Kit said that these people "need more understanding" because not knowing what they're going to be capable of can cause "stress, anxiety, and frustration" because it's "unpredictable".
She also said it can be "really frustrating to live in that world of uncertainty" when you "want to make plans" but you're not able to because you're unsure about how you'll actually feel.
"For people to see you on your lower symptom days and develop this expectation that that's how you should always be, when more often than not that's simply not the case.
"And of course, the cycle of having a low symptom day, falling into imposter syndrome, developing a flare-up, and having a brutal reconnection with reality that you are in fact not cured," she explained.
In the comments, other people found that they related to everything the woman had said to her.
One wrote: "The 'What so you're good now?' comments as soon as you have a good moment or you push through or laugh".
"This explains me so well as well but I’ve never found the words to describe it," another added.