Dealing With The “Great Expectations” Of A Medical Appointment

It happens to all of us with chronic illness. We look at our calendar and see an appointment looming in the future. It offers such promise. We feel a little excited at the prospect of what may come from it.

Hope. It offers hope.

It may be months away but it is 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!

So Many Scenarios

If you are anything like me, you’ll probably think of many different scenarios of what could happen in this looming appointment. So many you could write a novel! As you close your eyes to sleep at night, those scenarios will begin to 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 – I’d be very happy with that.
  • 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 the 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 past time.

The Big Day Arrives

You thought the day would never come but before you know it’s 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 Drs office. You just have to do it!

You 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.

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.

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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. I’m not talking about a situation where your Specialist was unkind or uncaring. I know it can happen and it breaks my heart to read of those experiences. For the purposes of this article, all Specialists are really good at what they do and genuinely care.

I’m talking about a situation where the scenario played out was one of your worst case scenarios. 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 crossroads. Changes you thought were way in the future might now need to be considered in the present. Hope begins to fade!

Rejoicing in hope, patient in tribulation, continuing steadfastly in prayer.” Romans 12 v 12

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.

So what can you do post appointment?

I have a few ideas that may help with finding the positives in what seems like the end of the world right now;

  • Talk to someone you trust; your partner, a friend or family member or post on a closed support forum where you feel safe.
  • Don’t make rash decisions.
  • Sleep on it. Often the worst case scenario won’t seem quite as devastating the next day.
  • 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.
  • Next to each discussion point create an action item. For example, your Specialist may have said a Pain Management Course might be helpful. If that’s the case your action item might include;
    • Research online courses
    • Make an appointment with your GP or PCP to discuss a referral to a Pain Management Specialist
    • Ask others on support groups for recommendations
  • Keep working your way through the list until you have an achievable action plan and helps give you some control over your situation.
  • Let hope return. The action plan can help give you renewed purpose. When we remain in what we think is a hopeless situation, we can make a worst case scenario even harder to deal with.
  • 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 “Great Expectations” have been dashed, is just to take time out. Depending on your level of disability, maybe a mini holiday to relax or a shopping trip to indulge in a treat.

Perhaps 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. A bit of online shopping, watching a good movie while indulging with your favourite chocolate cake. It really doesn’t matter what you choose to do, it just needs to be something non-medical that makes you feel alive.

Specialist appointments are par for the course with chronic illness. We need to develop coping strategies to help us through the difficult ones, as you can guarantee they will happen.

If you have a medical appointment looming you’ve been thinking about for months or weeks, creating numerous scenarios, take a step back. Think about what strategy you will have in place if your “Great Expectations” don’t come to fruition.

Being prepared might just help you engage better in the appointment and it will certainly help you cope better in the aftermath.

Take care

Sam xx

 

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m a Contributor at “The Mighty”. You can check out my published articles at My Author Page

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7 thoughts on “Dealing With The “Great Expectations” Of A Medical Appointment

  1. My expectation is to have a great laugh at every doctors visit. I am seldom disappointed. . But if I am, that is OK, the office staff remains fair game. Just saying 🙂

    Liked by 1 person

    1. I definitely have a good laugh with my medical team and staff too. They are great!

      I’m usually laughing with my anaesthetists too as I’m going under🤣

      Like

  2. I am overwhelmed. Im sick of my chronic illness. I;m sick of a life where I only leave the house to go to medical appointments. But I don’t have that luxury to lean on someone else. I am alone. ALONE. There is only me. I got sick. People left. I know its not me, its them. But I am alone. And my diagnoses get ever more and more fatal. Now its skin cancer. There is no one in my life. I have no friends left. They all found this too hard. mY husband was the first to leave. So how about everyone who undertands what i’m going through, who is living with intractable pain, and ever decreasing ability, how about you imagine what that would be like to be going through all of this with NO partner to help. No parents. no friends. No siblings. No one. yeah, I’m sick of being sick. I’m sick of the only time I leave the house being medical appointments. And half my doctors awant to refer me elsehwere because thy have no idea what to do, and the other half are fascinated but don’t see me as a person. there is in kindness for me. No care. I’m a problem. in short, no one loves me. literally. Im alone. And yes, its hard. I live for my kids. They need me to be alive. But that;s all I am. Alive. I stopped living a long time ago.

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    1. I am so sorry you are feeling so overwhelmed. Believe me, you are not alone. Many members on my support forum are also totally without their own support network in terms of family or friends and are also childless.

      I’d really encourage you to join Medical Musings with Friends and connect with others who truly understand.

      Reaching out to a counseling helpline can also provide the opportunity to discuss how overwhelmed you are with a trained professional.

      I’ll be thinking of you xx

      Like

  3. Yes, so many great expectations and inevitable deflations afterwards!
    I think my experience has changed a lot, like pre-2015 surgery where new symptoms came on, and the time prior where I spent nearly ten years back and forth to doctors and specialists. That earlier time was always trying to rustle up hope that someone would listen, believe me, take me seriously, actually do something. Any damn thing, but I never got anywhere and it was so unbearably disheartening. These recent years it’s been a bit different, still with lots of disappointments but sometimes some better appointments, other times being told there’s nothing else they can do (which is not easy to hear, so I can only imagine what it’s like for you, dear Sam). I love your list of tips, especially the one about making those actionable points because doing something – anything big or small – gives us a feeling of some control back, makes us proactive which I think can really benefit us mentally when dealing with all of this.
    Caz xx

    Liked by 1 person

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