Figure 1: Sutherst. Angela. 2017
Prior to the shoot, Angela was only known to me through Facebook. She responded to the call for volunteers on my Facebook page. Angela is a keen follower of my blog posts and she wanted to be involved to help raise awareness of the many conditions she has. She suffers from Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, and anxiety. Angela explained to me that it took her a while and a lot of consideration before she applied to take part. She is another person who dislikes what they see in photographs of themselves (although in figure 1 above she looks stunning).
Angela explained that she wears a mask every day and especially when she is at work. She went on to tell me that “when people say ‘be yourself’ that statement makes me laugh. If I did that, I’d probably never speak to anyone let alone go out in public! I don’t feel like the world owes me anything but I do feel that as I am still able to function relatively normally (or so people see) I need to get over my hang-ups and use that to increase awareness for people like my friend Zoe who is bedridden 90% of the time with M.E.” Angela is extremely generous and brave in stepping out of her comfort zone to raise awareness of CFS/ME to try and help others.
“Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (or encephalopathy) (ME) is a relatively common illness. The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions. CFS/ME places a substantial burden on people with the condition, their families, and carers, and hence on society . . . CFS/ME comprises a range of symptoms that include fatigue, malaise, headaches, sleep disturbances, difficulties with concentration and muscle pain. A person’s symptoms may fluctuate in intensity and severity, and there is also great variability in the symptoms different people experience. CFS/ME is characterised by debilitating fatigue that is unlike everyday fatigue and can be triggered by minimal activity. This raises especially complex issues in adults and children with severe CFS/ME. CFS/ME, like other chronic conditions for which the causes and disease processes are not yet fully understood, poses significant problems for healthcare professionals. It can cause profound, prolonged illness and disability, which has a substantial impact on people with CFS/ME and their carers. Uncertainties about diagnosis and management and a lack of clinical guidance for healthcare professionals have exacerbated this impact.”
– (Nice.org.uk, 2017)
At the moment, there is no single way of managing CFS/ME that works for everyone, but as Angela points out “there is a huge problem with N.I.C.E. deciding it is a psychological issue when it is neurological and the recommendation of positive thinking and graded exercise therapy has actually been hugely detrimental to a lot of people and in some cases made the condition so bad that they are unable to move at all. The people with the funding won’t listen to the experts. This I understand is the case with a number of ‘hidden’ illnesses.” This needs to change.
Alongside the CFS/ME, Angela has also been battling with anxiety. It can take over her whole body and prevents her from functioning normally when an attack occurs. She often has no warning. We all will experience feelings of anxiety at some point. We may feel worried about a medical test or sitting an exam.
Feeling anxious is totally normal in these cases. Imaging though, being unable to control the worry; being unable to control the feelings of anxiety; having constant feelings of anxiety and worry that totally overwhelm your body. It may be that you struggle to remember the last time you felt relaxed. Imagine these things and you may go some way to understanding how anxiety can become all-encompassing.
I have seen anxiety attacks in students at school. It strikes without warning and is often terrifying for the individual. They do not know what is happening, why they can’t feel their limbs or why they can’t breathe. Acceptance of anxiety and the removal of the stigma around it needs to happen if we are to help those around us.
“Anxiety is a normal, if unpleasant, part of life, and it can affect us all in different ways and at different times. Whereas stress is something that will come and go as the external factor causing it (be it a work, relationship or money problems, etc.) comes and goes, anxiety is something that can persist whether or not the cause is clear to the sufferer.
Anxiety can make a person imagine that things in their life are worse than they really are, and prevent them from confronting their fears. Often they will think they are going mad, or that some psychological imbalance is at the heart of their woes. What is important is the recognition that anxiety is normal and exists due to a set of bodily functions that have existed in us from our cave-man days.”
– (Anxiety UK, 2017)
Angela talked about some of her anxiety attacks whilst I was photographing the unmasked shot. I was struck with how she has managed to deal with it for so long. I found it sad that there are times when people cannot accept her when she wears a thin mask that doesn’t hide everything. They expect her to be the happy smiling person they have become used to. I think we all have a lesson here and need to be more understanding of people if they do not appear to be as you normally see them. Sometimes, being there to listen to them can help. Angela commented that the whole photo shoot session had been enjoyable as well as therapeutic. Being able to talk to someone who genuinely wanted to listen and not make judgments was just what she needed.
Both before and after the session, I observed Angela with her young son. The love and attention that she gave to him, nurturing him when he needed sleepy cuddles from her was so beautiful to see. Whilst Angela may have things she needs to deal with on a daily basis, she still has so much love to give to others. She is totally selfless in this. I find her strength of character and generosity of spirit so inspiring. I would like to thank Angela for being part of the project and for offering hope and support to other sufferers.
Other helpful websites include the following:
Figures 2 and 3: Sutherst. Angela. 2017
Anxiety UK. (2017). Anxiety Information – Anxiety UK. [online] Available at: https://www.anxietyuk.org.uk/our-services/anxiety-information/ [Accessed 27 Oct. 2017].
Nice.org.uk. (2017). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management | Guidance and guidelines | NICE. [online] Available at: https://www.nice.org.uk/guidance/cg53/chapter/introduction [Accessed 27 Oct. 2017].