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Invisible Disabilities Week at Camden and Islington NHS Foundation Trust - What Our People Say

Category: testimonial, Testimonials, Hidden Disabilities, NHS, Invisible Disability, Camden and Islington NHS Foundation Trust, What Our People Say, Staff Testimonial, Invisible Disabilities Week, Addison’s Disease


Next week is Invisible Disabilities Week (13-19 October). Here, Joanne Scott, Voluntary Services Manager, shares her story.

Invisible illness or disability is essentially an illness, health condition or disability that you cannot see. As part of Invisible Disabilities Week and as the secretary of the Trust’s Disability+ Staff Network, I am sharing my story to raise awareness. I was diagnosed with a rare and potentially life threatening health condition, Addison’s Disease, just over four years ago.

Addison’s Disease is a chronic condition brought about by the failure of the adrenal glands. Lifelong, continuous treatment with steroid replacement therapy is required.  Due to it being rare many people suffer for long periods before they are diagnosed or they go into what is known as an Addisonian or adrenal crisis which needs immediate treatment and if left untreated can lead to death.

I took the dramatic adrenal crisis and very close to death route to diagnosis and was off work for several months. I was very lucky to have a very experienced and supportive manager who was very helpful in helping me manage a realistic and phased return to work. She arranged for me to meet with Occupational Health before I returned to work and they were able to help advise on reasonable adjustments. This isn’t just about reasonable adjustments to getting back to work, but to help me manage work and my health condition in the long term. I got a laptop so that I could work at home on days when I felt well enough to work from home but not well enough to push through the commute to and from work. I now work from home one day a week which allows me manage my condition much better.

Generally day-to-day I am fine and live a pretty normal life, but stress in it’s many forms can impact me quite severely. I might look well but that doesn’t always mean I feel well.

Emotional stress or low level physical stress such as a cold can mean that I don’t have enough medication in my system to cope and can lead to things like brain fog, forgetfulness and exhaustion.  So apologies in advance if I forget your name, words or my train of thought in meetings.

I, like others with invisible illness, can also experience illness such as Flu much more severely than those without additional health conditions and can take much longer to recover.  Getting things like the Flu jab if you are able can help us all.

Experiencing shock is a major red flag for me, which can cause a crisis and includes things like vomiting. It requires an emergency injection of hydrocortisone to be administered and a trip to hospital. If you are suffering from a sickness bug, please try your best not to spread it. I know many people who still go to work or return back to work before they are fully recovered and this can have very serious implications for me or others with health conditions.

If you come across someone who appears to be very unwell or has been involved in an accident or incident causing shock, check to see if they are wearing a medical alert bracelet or tag for details about the emergency treatment they might require, it may be the thing that saves their life. I wear a medical alert bracelet and carry an emergency injection kit of hydrocortisone in my bag including details on how to administer the injection (so no more small handbags for me).

Many people with an invisible illness are often living and existing in a state of fear. What if symptoms get worse and I am unable to work? What will colleagues/managers think of me and will they understand? Will I be dragged through capability procedures if I can’t keep up with my role? Will I lose my job? Will I die as result of my illness? People with invisible illness don’t want to be ill, they want to be well and lead as normal a life that is possible.

 This is why I am very happy that the trust now has a Disability+ Staff Network. It is a place where colleagues with disabilities and long term health conditions can come together to offer each other support and understanding. As well as to provide assistance to the trust to make positive changes to our practice going forward, for both those with health conditions and managers looking for assistance on how best to support their staff.

Since the network's formation, we now have a ‘Workplace Adjustment Passport’ and ‘A Guide to supporting staff with disabilities and long term health conditions’ providing both staff and managers with the tools to best support each other.  As well as Disability Leave for those employees who may need it.  Find out more on the Disability+ Staff Network page here

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Camden and Islington NHS Foundation Trust

Inclusive features

  • Staff Network Group
  • Dependency (Parenting & Carers)
  • Home & Flexible Working

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