When Appointments Become Too Much: Appointment Fatigue with Chronic Illness
March has been one of those months that has quietly crept up on me and then completely taken over. It has been filled with appointments, tests, referrals, follow ups, and more waiting than I ever feel prepared for. On paper, I have managed quite well. I have shown up. I have answered the questions. I have done what needed to be done.
But underneath that, something else has been building.
That familiar feeling of appointment fatigue. That quiet overwhelm that sits in my chest and makes me want to cancel everything, switch my phone off, and retreat into my own little space where nothing is expected of me.
I know I am not alone in this, especially living with ME CFS and fibromyalgia, where energy is already such a limited resource. The problem is not just the appointments themselves. It is everything that comes with them.
The Weight of Ongoing Medical Care
This month alone has felt like a full time job in managing my health.
I have had my pain clinic appointment for fibromyalgia, which always brings a mix of hope and frustration. Hope that something might help, frustration because so much of it comes down to managing rather than fixing.
Then there is my TMJ situation, which has become more complex than I ever imagined. Lock jaw has a way of affecting everyday life in ways that are hard to explain unless you are living it. Eating, speaking, even resting your jaw can feel like a constant reminder that something is not right.
I have already had blood tests and x-rays, and now I am waiting on a brain MRI to look at the trigeminal nerve, alongside a CT scan of my jaw. Even writing that feels overwhelming.
Because it does not stop there.
In order to have these scans done locally and avoid a six hour return journey, I need to see my local MaxFax consultant first. That appointment is purely to go through my symptoms and complete a questionnaire so that the scans requested by my TMJ surgeon in another region can be arranged closer to home.
It makes sense. It is logical. It saves me travel, which with ME CFS is a huge consideration.
But it is still another appointment. And, it is more delay.
And then after all of that, once the scans are done, I still need to travel back to Bedford to see my TMJ surgeon again.
It feels like a cycle that never quite finishes.
When Everything Stacks Up
Alongside all of that, life has continued with the usual medical needs.
I have had my annual medication review with my GP, which is something I try to stay on top of, even though it always takes more out of me than I expect.
My GP is now also investigating why my heart rate is consistently sitting above 100 beats per minute. I had an ECG which came back fine, which is reassuring, but it does not explain why my body feels like it is constantly running when I am not.
Blood tests showed some issues with my kidneys and low iron levels, so I have now started iron tablets and have another follow up blood test booked.
Another appointment.
Another thing to remember.
Another thing to prepare for.
I have also had my HRT review, which in itself is manageable, but when added into everything else, becomes just one more demand on already stretched energy.
And then there is dermatology.
I have had a spot on my chin that simply will not heal. It has been there for over four months now. I have tried antibiotics, both oral and topical, and even hydrocortisone cream when I thought it might be eczema.
Nothing has worked.
So just over a week ago, I had a punch biopsy done and now I am waiting for the results, and another appointment.
Waiting is its own kind of exhaustion.
The Reality of Appointment Fatigue
What I am feeling right now is not just tiredness. It is something deeper.
Appointment fatigue is real, and it is something I think many people with chronic illness experience but do not always talk about. I have previously written about appointment fatigue.
It is the mental load of constantly having to think about your health.
It is the emotional weight of knowing that every appointment could lead to more tests, more referrals, more unknowns.
It is the physical toll of getting there, sitting upright, engaging, processing information, and then getting home and dealing with the aftermath.
With ME CFS, even a single appointment can cause a flare. With fibromyalgia, the pain can ramp up without warning. When you stack multiple appointments across weeks, or even days, the impact builds.
I can feel it happening.
That creeping desire to avoid.
To cancel.
To say I will rearrange and then quietly not do it.
The Push and Pull
There is a constant push and pull in my mind.
On one side, I know these appointments are important. They are necessary. They are part of trying to understand what is going on in my body and, where possible, improve my quality of life.
On the other side, I am overwhelmed.
I feel like I am constantly bracing myself for the next thing. The next appointment. The next result. The next conversation.
It becomes hard to find space to just be.
And that is where the avoidance starts to creep in.
Not because I do not care about my health, but because I care so much that it becomes too much to hold all at once.
Living With ME CFS and Fibromyalgia Through It All
Living with ME CFS means my energy envelope is already small and unpredictable. Living with fibromyalgia means pain is a constant background noise that can suddenly become very loud.
Appointments do not exist in isolation. They take from that limited energy and often demand more than I have to give.
The preparation alone can be exhausting. Getting ready, organising notes, remembering symptoms, planning travel.
Then there is the appointment itself, which requires focus, communication, and often advocating for myself.
And then the crash afterwards.
It is a cycle I know well.
If you have read my other posts on pacing or managing daily life with chronic illness, you will know how important it is to protect energy where possible. This month has tested that in every way.
Trying to Cope in the Middle of It
I am not writing this from a place of having it all figured out.
I am in it.
But I am trying to be honest with myself about what I need.
Right now, that means acknowledging that I am overwhelmed rather than pushing through and pretending I am fine.
It means spacing appointments where I can, even if it slows things down.
It means giving myself permission to rest without guilt on the days in between.
It means keeping things simple in other areas of my life. Meals, housework, expectations of myself.
The Emotional Side That No One Sees
One of the hardest parts of all of this is the emotional weight.
Each appointment is not just practical. It carries uncertainty.
Will they find something?
Will they not find anything?
Will this lead to more questions?
Will it help?
Will I forget to mention a new symptom?
And when you are dealing with multiple issues at once, those questions multiply.
It can feel relentless.
There is also the quiet loneliness of it. Sitting in waiting rooms, going through procedures, processing results. Even when you have support, so much of it is internal.
Reminding Myself Why I Am Doing This
When I feel like shutting everything out, I try to gently remind myself why I am doing this.
Not in a forceful way. Not in a way that adds pressure.
But in a grounded, honest way.
I am doing this because I deserve care.
I am doing this for my family.
I am doing this because my symptoms matter.
I am doing this because, even if there are no easy answers, understanding my body is still important.
Some days that is enough to keep going.
Other days, it is not, and that is okay too.
A Gentle Ending
As I sit here writing this, I am still waiting on results. Still have appointments ahead. Still feeling that pull to retreat.
But I am also still here, navigating it in the only way I know how.
Slowly.
Honestly.
One step at a time.
And for now, that is enough.
About me
I am a married mother of four children. One of those children is our granddaughter, for whom we are legal guardians and kinship carers. I run a small business, and I love to write, which is how this blog came to be. I write about family life, kinship care, and my experiences living with chronic illness and disability, including ME CFS, spinal stenosis, TMJD, chronic pain, and fibromyalgia. I am also very aware that I am doing all of this in my mid-forties, which still surprises me some days.
You’re not alone here. You’re welcome to stay as long as you need.
FAQs
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For me, it is not just the appointment itself. It is the build up, the preparation, the travel, the mental load of explaining symptoms, and then the crash afterwards. With ME CFS and fibromyalgia, even small demands can use up a huge amount of energy, so multiple appointments quickly become overwhelming.
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Appointment fatigue is that feeling of being mentally, emotionally, and physically drained by ongoing medical care. It is when the constant cycle of appointments, tests, and follow ups becomes too much to manage, even when you know they are important.
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I try to take it one appointment at a time rather than looking at everything at once. Spacing appointments out where possible, keeping the rest of my life simple, and allowing proper rest afterwards helps. Most importantly, I try to be honest with myself when I am overwhelmed instead of pushing through.
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Yes, and I feel this more often than I would like to admit. Wanting to avoid appointments does not mean you do not care about your health. It usually means you are overloaded and need space. That feeling is very real when you are living with chronic illness.
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With ME CFS, energy is limited and unpredictable. Even getting ready and travelling to an appointment can trigger a flare or post exertional malaise. It means every appointment has a cost, and that has to be carefully managed.
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Waiting sits in the background of everything. It is not just physical exhaustion, it is the mental weight of uncertainty. You are constantly holding questions with no answers yet, and that can be incredibly draining over time.
Disclaimer
This post reflects my personal experience living with ME CFS and fibromyalgia. I am not a medical professional, and this content is not intended as medical advice. Please consult your GP or a qualified healthcare professional for any health concerns.