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.
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.
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
I also write @ Blogs by Christian Women
If you would like to read a little more about my journey, here’s the link to My Story