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Signalling for Support — Navigating Life with a Hidden Condition

This is an arti­cle by the Brain & Spine Foun­da­tion and was includ­ed in the March 2022 issue of Pain Press — The Pain Mat­ters Supplement.

Not all dis­abil­i­ties, con­di­tions or ill­ness­es are vis­i­ble. Chron­ic pain, along­side a wide range of oth­er symp­toms and con­di­tions, belongs to a group of dis­abil­i­ties that are ‘hid­den’ or ‘invis­i­ble’. These are dis­abil­i­ties that can­not be seen or are not imme­di­ate­ly obvi­ous to oth­ers. Not every­one with an invis­i­ble ill­ness con­sid­ers or describes them­selves as being dis­abled and some might argue that what they expe­ri­ence is not as invis­i­ble as the phrase implies – it is sim­ply that peo­ple do not look hard enough or, worse, dis­miss what they do see. How­ev­er, regard­less of the con­di­tion, symp­tom or how each indi­vid­ual feels most com­fort­able describ­ing them­selves, peo­ple who are part of this com­mu­ni­ty face many of the same burdens. 

Hav­ing a hid­den dis­abil­i­ty cre­ates chal­lenges and bar­ri­ers that those with­out one sim­ply do not face, and this goes far beyond the day-to-day man­age­ment of your con­di­tion, pain or oth­er symp­toms. One of these chal­lenges is let­ting oth­er peo­ple know you may need addi­tion­al sup­port or under­stand­ing in cer­tain sit­u­a­tions. Dis­cussing some­thing so per­son­al, so often can be drain­ing and there may be trau­ma involved or sim­ply details you would rather not share, which is your right. 

Some­times, a lack of under­stand­ing can lead to oth­ers doubt­ing you or demand­ing proof of your con­di­tion — such as when using acces­si­ble facil­i­ties (e.g., toi­lets or chang­ing rooms) or request­ing a pri­or­i­ty seat on pub­lic trans­port. These sit­u­a­tions are stress­ful and can have a real impact on your well­be­ing – which is why it is impor­tant to under­stand how to access sup­port where it is available. 

Sun­flower lan­yards 

The Sun­flower lan­yard scheme was start­ed by the acces­si­bil­i­ty team at Gatwick Air­port in 2016 and is now a glob­al­ly recog­nised sym­bol — designed to enable peo­ple with hid­den dis­abil­i­ties to dis­crete­ly access support. 

In the UK, a grow­ing num­ber of shops and pub­lic ser­vices are offer­ing cus­tomers the oppor­tu­ni­ty to col­lect and wear a ‘Sun­flower lan­yard’ or pin badge. Staff are sup­port­ed with train­ing to recog­nise the Sun­flower and under­stand that some­one wear­ing one may need a lit­tle extra help. 

Vis­it the Sun­flower scheme web­site to find out more. 

Acces­si­ble facil­i­ties 

Many super­mar­kets, busi­ness­es and pub­lic venues now have signs on their acces­si­ble facil­i­ties which high­light that ‘Not Every Dis­abil­i­ty is Visible.’ 

This ini­tia­tive was kick-start­ed by a young per­son, Grace Warnock from East Loth­i­an, who has Crohn’s dis­ease. Grace want­ed to help raise more aware­ness and under­stand­ing of hid­den dis­abil­i­ties or invis­i­ble ill­ness­es by intro­duc­ing these updat­ed and inclu­sive signs. 

You can find more out about the ‘Not Every Dis­abil­i­ty is Vis­i­ble’ cam­paign here

Mak­ing trans­port more acces­si­ble 

‘it’s every­one’s jour­ney’ is a Gov­ern­ment-led cam­paign that is cham­pi­oning equi­ty of access on pub­lic trans­port. This cam­paign is aimed to encour­age every­one to be more mind­ful of their fel­low pas­sen­gers and to make pub­lic trans­port more inclusive. 

You can also find more infor­ma­tion about acces­si­ble facil­i­ties and oth­er rel­e­vant infor­ma­tion on the ‘everyone’s jour­ney’ web­site

Blue badge sign 

In 2018, it was announced that the Blue Badge scheme for park­ing with­in the UK would begin accept­ing appli­ca­tions from peo­ple with hid­den dis­abil­i­ties. Pre­vi­ous­ly, Blue Badges were only avail­able to those with obvi­ous phys­i­cal dis­abil­i­ties. This recent change now also allows peo­ple with hid­den dis­abil­i­ties or con­di­tions to park in dis­abled bays. 

You can find details on the eli­gi­bil­i­ty cri­te­ria and how to apply for a Blue Badge on the GOV.UK website. 

More sup­port is need­ed 

Although we hope the above infor­ma­tion may help you tack­le some of the bar­ri­ers and chal­lenges you face, we under­stand that more sup­port is still need­ed – on both a per­son­al lev­el and a social level. 

Along­side oth­er char­i­ties, the Brain & Spine Foun­da­tion is work­ing to dri­ve change and improve­ments in pol­i­cy and wider soci­ety to increase everyone’s aware­ness and under­stand­ing of hid­den dis­abil­i­ties. Day to day, we pro­vide a helpline ser­vice and peer sup­port groups to enable peo­ple affect­ed by neu­ro­log­i­cal con­di­tions to find the infor­ma­tion and sup­port they need, and to be part of a com­mu­ni­ty that under­stands and val­ues them. 

Luke Stama­tis is Infor­ma­tion Man­ag­er at the Brain and Spine Foun­da­tion 

More on neu­ro­path­ic pain & the brain