The reason I decided to have a go at writing this was because over the years I have heard so many patients talking about the difficulty in claiming benefits and the fact that the people dealing with their claims don’t understand anything about lupus. In a way I sympathise with the person that has to deal with a claim as lupus is far more complex an illness to have to assess than some others, it’s definitely not cut and dried so they can just tick off boxes. However, not understanding lupus does not justify them refusing benefits, so I hope that some people in this position will take the time to read this and try to understand more.
Incase someone is reading this and doesn’t know much about lupus let me clarify a couple of important points. Firstly every single lupus patient is different, the severity of their lupus is different and how it affects them personally is different. Secondly, lupus is an invisible illness, that means that often a lupus patient will look very well on the outside and yet be screaming in pain on the inside. The reason I wanted to clarify those points is that often people with lupus are incorrectly told they are not disabled, usually by someone that has read a small amount about lupus and decided that all lupus patients are equal.
Dictionary definition:
disabled
/dɪsˈeɪbld/
adjective
(of a person) having a physical or mental condition that limits their movements, senses, or activities.
Definition of disability under the equality act 2010.
The Equality Act 2010 defines a disabled person as a person with a disability. A person has a disability for the purposes of the Act if he or she has a physical or mental impairment and the impairment has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities. For more information click here.
Ok, so lupus definitely counts as long term as there’s no cure it’s for life, so that shouldn’t be in question. The second part regarding the physical or mental impairment having a ‘substantial’ and ‘long term’ negative effect on your ability to do normal daily activities is often where the problem lies.
Some people with lupus are able to live a relatively ‘normal’ life, they work full time, are parents, go to the gym etc etc. Then there’s others that due to physical pain, crippling fatigue etc find even getting out of bed and having a shower impossible. There’s also those inbetween that do all the things listed then on odd days getting out of bed and having a shower is impossible and this can happen suddenly with no warning. Lupus is not by any means an easy disease for other people to understand, us lupus patients barely understand what’s going on ourselves.
As I mentioned previously, lupus affects patients in many different ways and while some patients with lupus would be classed as having a disability under the Equality Act, some would not. So for example, a patient who has mild skin lupus that does not affect their day to day life in any way would not meet this definition. Similarly, a patient with systemic lupus who is in complete remission and asymptomatic and who is able to live a ‘normal’ life would also not be classed as having a disability.
In contrast a patient with lupus who had suffered severe disease that left them substantially unable to carry out their normal activities of daily living would certainly be classed as having a disability. For example patients who have had strokes leaving them paralysed, or severe musculoskeletal disease that limited their mobility, or heart or lung disease that meant that they were too breathless to perform their daily activities would all meet the definition of having a disability.
Many patients are severely fatigued and if this limits their day to day activities this would classify them as having a disability. Having lupus itself does not always mean that a patient will be classed as having a disability – it is how the lupus has actually affected the patient that it should be taken into account. This is important when patients with lupus apply for benefits or when their doctors compile medical reports on their behalf.
Claiming benefits isn’t an easy task, so if you have anyone that can help you through the minefield please ask them as I’m sure they’d want to help you. There is also a list of agencies at the bottom of the article who can advise on claiming benefits etc. It may also be necessary to ask your specialist to provide a medical report to back up your claim so do consider asking for that.
So, the answer to the question ‘Is lupus a disability?’ is ‘definitely in some cases’. As with everything to do with lupus nothing is simple, all of us are affected by lupus differently which is why lupus is an extremely complex and frustrating illness to treat and diagnose and for people to understand.
If you are struggling with mental health due to any of the issues above please contact your GP who can treat you or refer you for support.
Further sources of information
NHS advice for coping with money worries.
Citizens advice Benefits advice but can also assist with topics such as debt.
Mental health and money advice website, welfare benefits.
Money helper website general advice.
Money Helper website sickness & disability benefits.
Your local council. I have noticed my own council on social media offering lots of support for anyone struggling financially or mentally, so do contact yours and see if they can assist in any way.
Angie Davidson
The content on this blog should not be seen as a substitute for medical advice. If you have, or think you may have lupus, always seek advice on a qualified physician. Find out more in our Terms of Use.
