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How do you respond to a chronic disease diagnosis?
The SARAH acronym is useful for helping to understand, and support, the 5 emotional responses that an individual experiences as they adjust to a chronic disease diagnosis.
Receiving the determination of a chronic disease is life changing. We all respond to change differently and it is never a linear nor finite process.
The ex wife of a dear friend of mine shared with me the acronym SARAH. She used it as a manager responsible for leading change within her workplace. I have found it both reassuring and helpful in my understanding of where I am in my response to events that affect my life and throw me into the winds of change. I hope that you too can glean some understanding and acceptance of your own unique experiences in life. For those of you that are caring and supporting of people going through personal change, I have shared some strategies that may help you too.
Strong feeling and emotion is the hallmark of this phase – although at times this can also actually be characterized with zero emotion. You may not understand the change that is happening around, and to you. As a result you can feel almost paralyzed. In some this can be denial that the change is actually even happening.
My personal experience: My personal response to my chronic disease diagnosis can be best described as feeling like being a rabbit caught in the headlights. Everyone else around me seemed to understand what was happening to me before I did. My GP, Specialist, Work Cover agent and Work Rehabilitation officer all seemed to have been party to conversations from which I was absent. I in fact clearly recall my Work Rehab officer saying with surprise “Didn’t you know that the specialist has diagnosed you with Osteoarthritis. We have been talking about if for the last three weeks.” I was in shock, I had not heard those words and up until and even beyond this diagnosis, still believed that I had a work injury that I would fully recover from.
Supporting someone experiencing shock
How you can support someone: Empathise and listen. Being supportive and responding gently is vital. Stay close and ask the person effected what support then need, Did I say stay close? Stay close.
Anger or anxiety replaces shock once you realize the implications of the change upon your life. If anger is your response then you can be very sensitive , highly defensive and passive aggressive towards people suggesting that you need to accept or change the way you are dealing with your life. You may not initially agree with the need for change and start lashing out at the people around you. What you are really lashing out at is the things that is changing.
My personal experience: I was angry alright! This was not my imagined future. This was not what this new job was meant to bring me. I was going to retire comfortably in this role. I blamed the privacy guard of the reception front desk – it was too tall – I was only sore because I kept having to get up and peer over it when someone entered the library. I blamed the school Principal for not being prepared to get the groundsman to saw through the guard to lower its height. I was angry with my car for being a manual car. I was angry with myself for being so, so stupid as to catch Osteoarthritis.
Supporting someone experiencing anger
How you can support someone: You may see the person digging in their heels. They need you to be empathetic: ask questions and let them talk. Resist the temptation to fight their anger with insistence or your own anger. Listen, listen and listen.
Resistance can also manifest itself as rejection. You deny or reject the need to adopt a change within your life. You may feel apathetic, helpless and give up hope. This is only temporary and it will be natural to experience self-pity and a sense of injustice
My personal experience: Work Rehabilitation wanted me to revise how I teach. To do so sitting down. They wanted me to greet people by voice and get visitors to come to me for help rather than for me to get up and go to them. I did not want to do that. I thought it was a ridiculous expectation that I change my behaviours in this way.
Supporting someone experiencing resistance
How you can support someone: Patience here is needed. A large part of this phase is the persons sense of loss of power in their life. Help the person to take one step at a time. Ask what is the one small thing you can do today or this week that’s within your power here?
Acceptance occurs when you are coming to terms with the change in your life and are ready to accept or live with it.
My personal experience: I found that for me, my response to the chronic disease diagnosis was that I needed to take total time out from working, everyday life. This gave me the time and space that I needed to re-evaluate my needs and to prepare for the future ahead of me. I was very fortunate to be able to leave my job and take some time just for myself. I took 4 months off work to get myself sorted. Then COVID-19 reared its head, but that’s another story. Suffice it to say that at the time of writing this, I am still not in an official workforce. One of the major steps that I needed to take, during this stage, was to reduce the negative self talk that I had constantly in my head.
Supporting someone experiencing acceptance
How you can support someone: Be encouraging, nurture the persons taking of small steps and managing their associated perceived risks. Give positive feedback and help build momentum (in small steps) Let the person define those manageable steps.
Hope means that you will be feeling greater motivation and heightened energy. Your thinking is shifting and you are able to ask for help.
My personal experience: I decided to embody the mantra of “adopt, adapt and become adept.”
In short I decided to adopt the Osteoarthritis, make adaptations to my life with it, and become so adept at dealing with it that it becomes a success. See the image below “Adopt. Adapt and become Adept” for a more in depth overview.
Supporting someone experiencing hope
How you can support someone: Help the person to balance learning and the development of new skills. Be there to share and advocate for the new life vision.
Adopt, Adapt and become Adept
The image below shows the process for going through the stages to become adept with dealing with your chronic disease.
Energy Levels and reactions to life changes
Just as people experience different emotions to changes to their life, they also experience different levels of energy. Energy levels rise and lower according to the level of emotion being felt.