Appointment Fatigue

The past couple of years have involved GP / consultant appointment, after GP / consultant appointment, test, after test as well as results and referrals. It’s all so very exhausting.

"Appointment fatigue" is a phrase used colloquially to describe the exhaustion or weariness that can arise from having numerous healthcare appointments, particularly when managing a chronic illness. It can be physically and emotionally draining over time.

I've been diagnosed with Spinal Stenosis, Chronic Tennis Elbow, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), as well as other medical issues.

I have recently experienced appointment fatigue; I am tired and weary of appointments, waiting for test results, waiting for referrals, trying to understand my pain and it goes on and on. I am frustrated, fed up and depleted. Additionally, I have undergone numerous blood tests over the past couple of years which has led to a desensitisation of sorts. Whereas previously, at the sight of a needle, I would almost always hyperventilate or panic; I have been known to faint! - not anymore. I still have to close my eyes, or look the other way; I avoid any sight of those needles! that works for me.

Vanishing expectation

At the start of my healthcare journey, I would pin all my hopes on appointments, with the hope of finally getting an answer, getting the treatments, or help / reassurance with symptoms; but when you have one condition where there is no treatment for, and/or other medical conditions where surgery is not recommended – this is how the depletion creeps in, and the appointment fatigue kicks in.

Understanding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as a Long-Term Illness

What is ME? Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term illness characterised by extreme fatigue, chronic pain and other debilitating symptoms that can worsen with physical or mental activity, often referred to as post-exertional malaise. This condition can lead to additional medical problems such as cognitive difficulties, sleep disturbances, and debilitating chronic pain (muscle pain / joint pain). The unpredictable nature of ME/CFS often forces significant lifestyle changes, impacting daily activities and social interactions. Moreover, with ME/CFS, appointment fatigue is almost inevitable, a phenomenon where the effort of attending medical appointments and consultations exacerbates our symptoms, making it even more challenging to access the necessary healthcare support.

The constant cycle of attending appointments takes a toll on my energy levels and overall well-being. It's frustrating to navigate the healthcare system and constantly explain my symptoms to medical professionals who may not fully understand or believe in the severity of my condition. The lack of progress or effective treatment options adds to the exhaustion, leaving me feeling trapped in a never-ending cycle of appointments and disappointment.

But despite the challenges, I remain determined to advocate for myself and others with ME/CFS. I actively seek out resources and support groups to stay informed and connected with the community. By sharing my experiences and raising awareness, I hope to contribute to a better understanding of this debilitating illness and improve the healthcare system's response to it. Although the journey may be exhausting, I believe that together we can make a difference and bring about positive change.

Impact of Appointment Fatigue on Mental Health

Constantly having to attend appointments can lead to appointment fatigue, which can take a toll on your mental health. The overwhelming feeling of having to constantly juggle appointments and commitments can lead to stress, anxiety, and even a sense of helplessness. It's common to feel drained and demotivated, making it challenging to muster the energy and willpower to attend yet another appointment. The battle against not wanting to attend these appointments can be exhausting and can exacerbate feelings of symptoms, guilt and frustration.

Attending appointments feels like a never-ending cycle, but there are strategies that I find help me manage appointment fatigue. These strategies can prevent overwhelming clusters of commitments and alleviate some of the burdens associated with appointment fatigue.

Strategies that help with Appointment Fatigue

Here are some strategies that help me manage healthcare appointment fatigue:

·      Prioritise and plan: Planning my diary and spacing out appointments can help prevent overwhelming clusters of commitments. For me a cluster of commitments too close together can be overwhelming, and exhausting, it has and can cause me to have an ME (Myalgic Encephalomyelitis) relapse - this is when the debilitating PEM kicks in.

·      Self-care and rest: I have started to recognise the importance of self-care and always make time for rest and relaxation (pacing – this is key) - I don’t have much choice in this anyhow as my condition forces me to rest, especially when the PEM hits me. I set aside periods for activities that calm me, such as gentle yoga, reading, listening to podcasts, blogging or watching TV.

·      Support network: I seek support from friends and family. Sharing my concerns and challenges with others who understand/listen does help alleviate some of the burdens associated with appointment fatigue.

By utilising my calendar and embracing flexibility in rescheduling, I have found myself feeling less overwhelmed and more in control of my appointments. Additionally, the use of reminders and notifications has significantly reduced the likelihood of missed appointments and has made it easier for me to manage multiple GP / consultant appointments without feeling overly stressed.

Finally

But for now, I find attending appointments depletes me - causing me deep exhaustion / chronic fatigue. Driving to the surgery and/or hospital, sitting in an uncomfortable chair in the waiting rooms, trying to make my foggy brain remember, trying to grasp onto hope, and then explain my symptoms and pain to medical professionals; remembering after each visit that I’m stuck in this cycle for the foreseeable future. It's all very exhausting

About me

I am a married mother of four children, in my mid 40's. I run a small business and enjoy writing, which is why I blog. My blog focuses on my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia.