Participatory Photography and Invisible Illness: making the invisible, visible

Dr Susie Donnelly writes for PhotoVoice on her participatory photography project supporting people living with a chronic illness. These images aim to ensure that the patient voice is heard in the health care system. 

You do not see the chronic illnesses that are present in the people around you; in your colleagues, your friends, perhaps even your loved ones. You do not see how they are incrementally restructuring their lives, how they are fighting fatigue and depression, how they struggle to fit into normal social life. Chronic illnesses such as rheumatoid arthritis, tinnitus, Crohn’s disease, COPD…the list goes on…are very common illnesses that are mostly invisible to outsiders. This is why – I believe – that photography offers a crucial tool to make these invisible illnesses visible.

"So many boxes of pills. I’m 35 years old and when I think about having to take medication every single day for the rest of my life, it feels very daunting and a little depressing. I tend to put these boxes out of sight and just focus on a week at a time."

“So many boxes of pills. I’m 35 years old and when I think about having to take medication every single day for the rest of my life, it feels very daunting and a little depressing. I tend to put these boxes out of sight and just focus on a week at a time.”

 

I am a social scientist who is trying to find ways to make the patient voice heard in health care systems. I am also someone who lives with a chronic illness, Hashimoto’s thyroiditis. This is a relatively common autoimmune disease. In simple terms, the immune system misrecognises the thyroid as a virus and attacks it, as it would the flu virus. In turn, the thyroid gland starts to slow down and the essential hormones that coordinate many of the body’s functions are restricted. Treatment involves simply taking a synthetic hormone in the form of pill every day to replace the lost thyroid hormone. On the face of it, Hashimoto’s is therefore a condition that is very manageable. However, managing this illness does not account for life! It does not account for periods of high stress or grief and loss that can throw my illness into flux and lead to symptoms of brain fog, depression, weight gain, fertility problems, fatigue and more. The term “Hashimoto’s” is not easily understood by the people around me. It is a word that does not capture the constant battle with fatigue, or the discipline and structure within my day dictated by my medication regime. While I try hard to maintain a social life, it is difficult to be flexible or casual. This is hard for people to understand because I look “normal”. I have a good career, a fantastic partner and I get on with life. I find it difficult to express how I feel in case people think I am being over-dramatic or write me off as the “worried well”. It’s hard to explain what it’s like to live your life constantly OK-ish and having to accept that is probably as good as its going to get.

 

"Routine blood draw to check my hormone levels. Its supposed to be every few months but I’ve needed testing more often. I hate when it bruises. I find myself hiding the mark from others to avoid awkward questions. I also wonder what people think when I have to go to the doctor so regularly!"

“Routine blood draw to check my hormone levels. Its supposed to be every few months but I’ve needed testing more often. I hate when it bruises. I find myself hiding the mark from others to avoid awkward questions. I also wonder what people think when I have to go to the doctor so regularly!”

 

I was fortunate enough to meet the folks at PhotoVoice and receive training with Tom Elkins earlier this year. I went on to conduct a photovoice project to capture the lived experience of tinnitus patients. Tinnitus is the perception of noise or ringing in the ears. It is chronic, incurable and invisible. Photography, and the use of photo elicitation in interviews, was key to communicating people’s experiences of tinnitus. Participants determined the course and nature of the interview by selecting specific images for discussion that were meaningful to them. These were photographs that the patients had taken over a 1 week period. Typically in qualitative research, you approach a subject with a set of questions or topics that you wish to discuss. Therefore, you have some degree of control over the conversation. However in this case, the photographs chosen by the participant set the agenda. Participants knew more about what would be discussed in advance than I did. I have spent many years carrying out in-depth interviews with subjects but have never experienced anything like this shift in the balance of power between the interviewer and interviewee. And the results were deeply insightful.

 

"Oh my god! The paperwork. Its hard to keep track of the prescriptions, referrals, chasing lab results, claiming from insurance…the list goes on! Thankfully my partner can help with some of this."

“Oh my god! The paperwork. Its hard to keep track of the prescriptions, referrals, chasing lab results, claiming from insurance…the list goes on! Thankfully my partner can help with some of this.”

 

On a personal level, I was struck by how much I could relate to tinnitus patients and their experience of self managing their condition. Even though our illnesses were seemingly different, I was surprised to find that I shared many frustrations with tinnitus patients which were often social in nature (i.e. relationships with others, feeling like a burden, functioning in work and social life when fatigued). This work has inspired me to continue to explore the self-management of chronic illness from a sociological perspective. I am not seeking to understand the disease, I am seeking to understand how the person lives with the disease. Crucially, I want research to play a role in helping patients to communicate their experience and perspectives so that it is recognised by family, friends, clinicians and wider society. And from this dialogue, we can begin to find meaningful solutions. I believe that photography will be a hugely powerful tool in accomplishing this goal and making the patient voice heard in research.

 

Featured image: “This is my weekly pill box. It helps to ensure that I take the correct dose of my medication on the correct day. I find this helpful.”





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