Invisible Disabilities
Invisible or hidden disability is a term used to describe a wide range of health conditions and learning difficulties including anxiety and depression, visual and hearing impairments, autism, persistent pain, CFS/ME, Crohn’s disease, colitis, endometriosis, migraines - the list goes on…
“It is often defined as a disability that cannot be seen or is not immediately obvious to others”
I have worked as an Occupational Therapist for 32 years, mainly within the clinical field of Persistent Pain and Fatigue conditions. During this time clients have not necessarily used the term invisible disability, but they have frequently said that it would be so much easier if their disability was more visible. They have joked about having labels like ‘pain is a disability’ tattooed to their foreheads to make it more obvious to others.
Interestingly, although I fully support and alert my clients to the sunflower lanyard scheme, many say that they do not actually want to wear something that labels them as disabled. They are concerned that people then make assumptions about what this label means and potentially offer help that is not required.
I personally like the wristbands, badges and lanyards produced by stickman communications. They offer a bit more information about how a person is specifically challenged. Again, to use these openly is a very personal decision.
The term hidden disabilities reached the media when the blue badge scheme expanded in August 2019 to include people with invisible illness/disability in the eligibility criteria. I have successfully supported clients in applying for a blue badge under this criteria. Some report that it has made a significant difference to their lives, others say they largely choose not to use it as they don’t want people to question their eligibility. This may be because they look ok or again make unhelpful assumptions about their health or general abilities based on how someone presents.
To help understand more about this term and the difficulties people experience as a result of invisible disability I asked three colleagues who work within Vitality360, and who have openly discussed their pain and fatigue, the following three questions:
Would you consider Persistent Pain and Fatigue to be an invisible disability and what does this label mean to you?
Could you describe any difficulties/misunderstandings you have had in the workplace?
Could you describe any difficulties/misunderstandings you have had when you are out socially with friends, family and strangers?
I have used these questions and direct quotes from my colleagues to structure this blog.
Would you consider Persistent Pain and Fatigue to be an invisible disability and what does this label mean to you?
‘To me, a hidden disability is where your health (physical or mental) restricts your ability to carry out day-to-day activities when compared to someone who doesn’t. It is hidden because you can’t tell if someone experiences those restrictions just by looking at them. You often get someone saying “you look really well” when you are really not feeling it!’ AMN
‘For those with no experience, lack of empathy and limited powers of observation yes, it is. But if you live with persistent pain/fatigue, have someone close to you, or work with clients with persistent pain/fatigue there are many visible signs to inform you. For example,
The way a person holds their frame when they walk; their actual gait.
When sitting, the constant fidgeting could be indicating searching for a comfortable position.
A ‘pained’ expression on the face
Not following a conversation because attention is drawn to the pain; brain fatigue due to the pain and pain medication; looking a little confused for no apparent reason.
Sinking in a chair lower and lower.’ SWS
‘Yes, I would. It means a lack of empathy from others sometimes. Considering it this way, helps me to have more compassion towards myself and others’ reactions.’ KSL
‘I don’t like the label, and not entirely sure why. I guess it describes it from the other, laypersons’ point of view. But somehow., I think if something is described as invisible it is less likely to be taken seriously.’ SWS
The suggestion here I believe is to be cautious about the language we use. Be led by the person with the lived experience, use the words and terms that they use, and carefully reflect back that you have understood their personal take.
Could you describe any difficulties/misunderstandings you have had in the workplace?
‘I think that I have been treated differently in terms of adjustments compared to a colleague who used a wheelchair (in fact he said to me that he thought that). So his targets were adjusted, when mine weren’t. I think it is really difficult for employers and colleagues to understand – or maybe believe it. I feel as though my skills have been taken less seriously because I can’t work full time.’ AMN
‘The business owner I worked for lacked knowledge about working and fatigue, and was frustrated that I could not manage the hours I had been employed for. There were also not any HR policies in place so this meant that there was no support or guidance available, and the flat structure of hierarchy meant this all had to be negotiated directly within my relationship with the owner and without mediation. During this time, my symptoms became much more acute, especially around pain, and whist I enjoyed the role I realised that it was not sustainable or really serving me.' KSL
It is important that we are fully aware of the legislation that supports all disabled people including invisible disability. Andrew Atkinson, BLB Partner, Specialist Chronic Pain Solicitor, explores the subject of rights for people with invisible or hidden disability in his article Invisible Disability: what are your rights? In this article he refers to the downloadable booklet produced by the TUC, You don't look disabled which also offers some useful guidance illustrated with case examples about supporting members with invisible impairments, and supporting people in the workplace with invisible disabilities.
I believe the most important thing as an employer is to offer the opportunity for employees to talk about their health and any challenges they are experiencing if and when they choose to do so. Try to just listen and do not jump in with solutions unless you are asked to.
Could you describe any difficulties/misunderstandings you have had when you are out socially with respect to friends, family and strangers?
‘Some of these I experience are:
People deciding to walk to another pub, or to go on to a pub after eating out
Being in noisy environments
People wanting to go out later because of childcare constraints, which makes my energy management difficult
Not being able to find a seat
Difficulty parking close to the venue
Staying out late
I feel like I am making a fuss if I say that I’m not able to do any of these things, so often don’t mention it and avoid going out.’ AMN
‘Others can be confused by my choices or requests such as not going to a particular environment. Strangers ironically tend to be more understanding if I can explain the issues well enough. The fact that I repeatedly say no, often don’t answer the phone, and take a long time to be able to arrange to see people and may change this on the day, etc causes friends frustration.’ KSL
‘Although statements such as, ‘‘no Sue can’t do that it’s too hard for her”, or ‘‘no Sue can’t go there that hill is too steep for her”, or ‘‘sit down love you need a rest” and “you should stop now, you’ve done enough” are intended to be caring, they miss the point. We should not assume how much someone with persistent pain and fatigue is capable of – we should ask. Likewise, we should not make decisions for them, based solely on what we think is best for them. They don’t necessarily understand that persistent pain and fatigue vary from day to day, and that therefore you are the best person to know what is right for you, and that there is more to you than your disability.’ SWS
These statements give us some valuable insight into what might be helpful to consider if you are organising a social event. If you are aware that somebody is living with a disability - whether visible or not - check arrangements with them first. Do not make assumptions about what might be the best option. Ask, listen to the answer, and negotiate something that works for everyone.
Written by Beverly Knops, Specialist Clinician, and team members
Further resource:
hiddendisabilitiesstore.com offer training via videos on their website plus more in-depth and bespoke hidden disabilities training.