Here We Go Again….More Medical Appointments Ahead!!

 How can we practically deal with the expectations of yet more upcoming medical appointments?

If you’re anything like me, you probably have a team of Specialists/Consultants plus a GP/PCP and perhaps an occupational therapist, physiotherapist, podiatrist, dietician, nurses, carers etc.

Feeling overwhelmed? Me too. I think that’s perfectly normal. It’s a lot to manage, too much when you consider we don’t feel well or we are in excruciating pain.

It happens to all of us with chronic illness. We look at our calendar and see an appointment looming in the future. The reality is we probably see multiple appointments looming with the variety of doctors on our team trying to keep us moving, living, surviving, etc.

Often, we feel a little excited at the prospect of what may come from these appointments.

Hope. They offer hope.

They may be months away, but they are indelibly printed on our mind. It’s like we have a “post it note” stuck to our forehead, which, of course, only we can see!

Like me, you’ll probably think of many different scenarios of what could happen in these looming appointments. So many you could write a novel! As you close your eyes to sleep at night, those scenarios play out in high definition colour. Each scenario has its own unique outcome;

We have a cure – the ultimate outcome.

We have a new medication to take away all pain – Where do I sign?

We can run more tests to see what else is going on – hmmm…that could be interesting!

We need to do more surgery – Noooo!!!!

We can’t do surgery – Thank goodness!

I need to refer you – Oh No, not another Specialist.

We need to admit you to hospital to stabilise you – I’m so over being in hospital, let me out of here!

We can’t do anything more, no cure, no treatment,  your rare disease doesn’t fit into a simple diagnosis, we are sorry – Me too!

The Day Before the Big Event

The anticipation and excitement of thinking about your upcoming appointment starts to fade a little the day before. Nerves set in and reality dawns on you. Somehow, you have to physically get there. That’s hard work. You’re chronically ill and in pain. Going anywhere is difficult. Sitting in specialist waiting rooms is not an ideal pastime.

The Big Day Arrives

You thought the day would never come, but it’s finally here. You know you need to push through physically to get there. You have your own military style precision plan to get from your home to your Doctors office. You just have to do it!

You somehow make it there, sometimes with adventures you could do without along the way. It doesn’t matter, though. What matters now is discovering which scenario will play out. You have your notes, your questions, you’re ready.

There’s no turning back now. Hope remains.

The Main Event

Months, weeks and days have been spent thinking about and planning for this one appointment. All that effort and it will soon be over!

If it’s a new Specialist you may get allocated 45 minutes (plus a lovely account to pay). If it’s a Specialist already on your team, 15 or 30 minutes is about the norm.You get out your list eager to tick off every last item. In my experience points one and two on said list often open up a conversation which make points three to ten vanish into thin air.

Sometimes those points are covered off during the discussion. That’s a bonus! Your mind is quickly trying to take in the scenario the Specialist is placing before you. Is it your worst case or best case scenario? Hmm….you’ll have to think about that later.

You can feel the appointment coming to an end so you look at your phone again, just to check you’ve covered all items on your list.Your Specialist stands up. It’s over! Time to go. All your anticipation, all your planning, all your energy to get here and it’s all over so quickly.

Or is it? There is still the aftermath to come.

The Aftermath

Sometimes, the aftermath is a positive experience. Your expectations were met. You have a care plan put in place. You have a follow-up appointment in a few months or maybe sooner. You leave with an exhilarated feeling and want to celebrate. Love those appointments!

Sometimes, the aftermath is a world of pain. Perhaps you were told, ” I’m sorry, there is nothing more we can do but provide ongoing support.”

This kind of scenario needs time to process. Grief and all the wonderful stages that come with it begin to wash over you. It is perhaps a turning point in your life, a crossroad. Changes you thought were way in the future might now need to be considered in the present.

Hope begins to fade!

So what can you do post an appointment to ensure you not only survive but eventually thrive?

Dealing with the “Great Expectations” Let Down

So what next? I could say dust yourself off and get on with it but we all know it’s not as easy as that. For one thing you have invested so much emotionally in the lead up to the appointment, the let down of a worst case scenario hits incredibly hard.

It’s quite effective to reset your thoughts and worth giving a go along with deep breaths, which always help me.

So what can you do post appointment?


I have a few ideas to help find the positives in what might seem like the end of the world right now:

1. Talk to someone you trust; your partner, a friend, or a family member.
2. Post your thoughts on a closed support forum where you feel safe.
3. Don’t make rash decisions.
4. Sleep on it. Often the worst case scenario won’t seem quite as devastating the next day.
5. In the morning, make a list of what was actually said at the appointment. Writing it down makes it real and helps you to digest it.
6. Next to each discussion point on the list, create an action item. For example, your doctor may have said that seeing a pain management specialist might be helpful. If that’s the case, your action item might include:
   • Research reviews online for pain management specialists in your area;
   • Make an appointment with your GP or PCP to discuss a referral to your chosen Pain Management Specialist
   • Ask others on support groups for recommendations and their experiences of pain management therapies and medications
7. Keep working your way through the list until you have an achievable action plan and some control over your situation.
8. Let hope return. The action plan can help give you renewed purpose. 
9. Surround yourself with positive friends both online and in person. While you want empathy after a difficult appointment, you don’t need people who will fill you with stories leading you further down a path of despair. You need understanding, support and encouragement.

Take Time Out

Sometimes, the best thing to do when our expectations of an appointment have been dashed is just to take time out. 

Depending on your level of disability and financial situation, maybe a mini holiday to relax or a shopping trip (online works well) to indulge in a treat. 

Perhaps have lunch or dinner with your partner or close friend somewhere with a beautiful outlook or a drive in the country. 

If, like me, your disability renders you housebound, there are still options. Watching a good movie while indulging with your favourite chocolate cake is not a bad way to take time out. It really doesn’t matter what you choose to do. It just needs to be something non-medical that makes you feel alive.

If you have a medical appointment looming that you’ve been thinking about for months or weeks, creating all kinds of scenarios, take a step back. Think about what strategy you will have in place if your expectations don’t come to fruition.

Being prepared for numerous outcomes, good or bad, might just help you engage better in the appointment, and I know it will help you cope better in the aftermath.

If you find you can’t think of anything other than the upcoming appointment, one of my occupational therapists gave me a really simple and effective tool to help feel grounded when feeling overwhelmed by any situation.

It’s called “5 Senses Grounding.”

You start with 5 things you see and work around to 1 thing you taste.

It’s quite effective to reset your mind and relax and is worth giving a go along with deep breaths, which always help me.

You’ve got this, and please know you are not alone!

Take care

Sam xx

Come to me, all you who are weary and burdened, and I will give you rest.”

— Matthew 11:28, NIV

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