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Ashgate Hospice > The hidden challenges of living with an invisible illness – by Arlene Honeyman, Head of Supportive Care

Arlene Honeyman has been leading the hospice’s Supportive Care team since she joined Ashgate eight years ago.  

In her role as Head of Supportive Care, she dedicates her life to supporting people faced with a life-limiting illness and their families.  

Two years ago, doctors told Arlene that she was living with multiple myeloma – a type of blood cancer that is treatable, but not curable. 

We caught up with Arlene as she bravely sheds light on the daily challenges faced by those living with hidden illnesses. 

How has life changed for you in recent years?

Two years ago, I was diagnosed with multiple myeloma which is a type of blood cancer. It is treatable but not curable; an illness that follows a process of remission and relapse. And about five years before this, I was also told I have a rare autoimmune condition which makes my skin incredibly fragile. I initially thought it was all part of the aging process but as time and symptoms have progressed, it became clear to me that I needed to adapt to a new way of looking after my body and living my life.

The process of going from being in good health to finding yourself categorised as disabled is enormous, especially finding that you’re unable to do things that you might have previously taken for granted. 

It has taken a while for my mind to catch up with how I go about living my life now. At times it can still feel like I am playing catch up. By this, I mean, no sooner have I got my head, heart and body around another change when, yet another comes upon me. I have learned this tricky dance, and I am normally pretty good at adapting to each successive change. I want to stress that the process takes time, and I need to be patient with both myself and others. I hope for patience and wisdom from those around me. 

How does your health condition affect you and those closest to you?

My close ones have been significantly affected because our plans, their expectations, and my own have had to be altered numerous times. I think the sense of loss and the mourning of these losses is the greatest impact. The first condition had a major impact on my life and meant I needed to make several adaptions to how I live

My experience working with people at the hospice has been incredibly positive and I think that is a testament to the calibre of everyone I work with. I also attribute it to the courage required to openly discuss the condition I live with, bringing it out of the shadows and into the light. Ultimately, I have been very fortunate to be able to continue to work in a role about which I feel passionate. 

What difficulties do you find you often encounter in day-to-day life?

Since being diagnosed, my disability has progressively become more challenging. I refer to this in terms of a decline in overall health and the shift I’ve noticed in how others perceive me and how I interact with the world around me. At times, the changes have almost been unnoticeable, even to me. Little things that I used to be able to do have slowly changed.  

This includes being unable to wear shoes other than very soft slipper types for many years as the skin around my ankles would break down, not a good look for a woman who enjoyed wearing heels! I need to get into and out of cars by swinging my legs around and slowly getting up or down (think of side saddle on horseback). I need extra room when doing this as a slight knock on the car door car causes skin damage and painful bruising. Opening jars can be hazardous because if the lid is tight, my skin bruises from the exertion of untightening it. My fingernails are very brittle and soft which can cause me problems with tying and untying things.  

I hope these insights will help people understand the impact having a hidden illness can have on everyday life and my resulting dependency on others and their kindness. 

What we can do to help people living with a hidden disability  

  1. Do not make assumptions, check things out in a kind and respectful manner. This relates to all things we do from organising meetings, both the venue and timing to expectations around pace and work output. With a little compassionate enquiry, hidden strengths and talents can be found.
  2. Allow each interaction to be respectful and real. I think it is important to consider empathy. It is often misunderstood and can be mixed up with sympathy. Empathy can offer space for sympathy to be built up, whilst sympathy can load them up with the emotions of others.
  3. Be kind and thoughtful to everyone! Then any hidden disability or struggle will remain just that and not be added to by unkindness and thoughtfulness. 

What are the challenges you face when it is not something that people can readily see?

Treatments that I receive are welcome but can create more issues for me when going about my daily life. The illnesses I live with combined with the treatments cause fatigue, nausea, and infection. These are the main difficulties that challenge me. I have good strategies in place to support myself with them, but they can be quite unpleasant at times.

I am so thankful that they have not become too challenging. Surprisingly, they are a type of gift, one that I wouldn’t have chosen but has brought a different sense of clarity to the purpose of my life. They help to highlight the importance of some elements over others that I might have taken for granted in the past. 

What can others – including people at Ashgate Hospice – do to make things easier for people with hidden disabilities? 

Hidden disabilities are a bit tricky to encounter as they are ‘hidden’ and unless in the know, people tend not to make any adjustments. As someone with a hidden disability, I find this uplifting, as it allows me to be treated like anyone else. Never underestimate the value of fitting in with the herd. Sometimes this can be quite disconcerting though, and I find myself trying to make my own adjustments either to ‘fit in’, ‘not make a fuss’ or pluck up the strength to speak of my situation. It can be a tough option to take. 

I think the best we can offer – and I include myself in this – is hope; to try to meet each person with humility, appreciation, and positivity. I think it is important to have a gentle, compassionate but curious mind for any interaction with others.  

What advice have you received that could benefit others? 

A colleague recently spoke with me about Dr Gabot Maté who is a physician and researcher of trauma, his words have struck a chord within me. He said: “Trauma is the invisible force that shapes our lives. It shapes the way we live, the way we love and the way we make sense of the world.” His words showcase how we can all support each other through the changes we experience throughout life. I personally find it helpful to consider that they are mainly hidden in plain sight. 

I have been incredibly fortunate; I am surrounded by caring people and have a good strong voice and am usually able to assert myself and advocate for my needs. I consider myself fortunate, acknowledging that not everyone shares the same privilege. I believe that Dr. Maté’s approach, aligned with the one we aim for at Ashgate Hospice, can be beneficial for everyone. I think the important challenge we all face is to keep our minds clear, compassionate, and open towards others.