Sunday, July 16 2017
I am going to set a scenario:
You have been called back to your doctor's office to review recent tests done and while you're waiting patiently (and anxiously I might add) to find out what has or is going on you can't help but hope that you will hear these three words "ALL SEEMS FINE". You try not to think about what you will do if that doesn't happen as you don't want to "rock the boat" or whatever the colloquial phrase is.
You know speaking of things you tell yourself, I was in hospital once with this lady who told me that she "willed herself to get cancer" and that it is possible that I did too... It is safe to say we were not on the best of terms and those 4 weeks of my life were horrible!
So back to that Doctors appointment...
The door opens, the receptionist calls your name and you walk in and take a seat. There isn't often time for small talk and the Doc gets straight to the point. "The results are in.... the test show you have [insert illness]....". By this point you may have zoned out completley (why you should always have backup) and gone into shock, it is naturally your bodys way of protecting you.
But you will leave and head home, all while you are wishing you knew what the doctor said.
Instead you turn to DR Google and start googling your disease and symptoms. You shouldn't have gone there, you have opened yourself right up to trouble and a vortex of stress/worry! Dr Google brings up all this images and medical reports that are so grim and scary and you feel yourself on the brink of a panic attack...
You compose yourself and stop for a moment...
You know NEED support but you don't know where to turn... so that is where this post will hopefully provide some insight.
Where to find support and information after a diagnosis
I know the above scenario might seem over the top or seem unlikely, but I can tell you that it was from my own personal experience on how I handled situations where I got bad news.
I learned Google was not my friend nor was Dr. Google, I found after the first few times that it really wasn't helping the situation aside from making the diagnosis a bit traumatic.
But here are ways to find support without causing yourself harm in the process:
#1. Speak or consult with a professional:
So I booked another consult and took my husband with me this time as he was eager to hear the plan going forward, and to be honest so was I. He told me the game plan going forward, my hubby heard it all as I zoned out again, but he referred me to a stomal nurse. She became my biggest life-line these past 4 years and has helped me on so many occasions.
It is important to really get a good grasp on what is available, so don't underestimate the support from the professionals.
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#2. Lived advice and experiences are very valuable and helpful:
One of the benefits of learning from lived experiences is that it can offer you a perspective or advice that a Doctor or health professional might not necessary know, and while a Doctor might know the text book side of things they might not be able to give you a total view of things. Still refer to your doctor for any health issues and management, but don't discount the account of a real person either.
How will you find these types of advice?
Keep in mind:
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#3. Search on facebook for groups or support groups:
You can also google "support groups for _INSERT DISEASE_" as there are some forums online and support websites dedicated to helping to support you during any stage of your illness.
I learned a lot from connecting with others in groups, especially about treatment options or stoma issues, so there is a lot of value in groups.
Keep in mind:
Some members posting might be partners or parents of a person who is unwell, some groups only allow patient members to join others allow carers to join too. If you are a carer and if your daughter or son is in the same facebook group as you, be mindful of what you post ABOUT THEM, it is their story to tell afterall and you might disclose personal details that they hadn't told their best friends let alone strangers online, so be mindful of their privacy and respect what they have told you in confidence too.
One last thing I have to add is sometimes being a member of facebook or online groups can get a bit too much at times, I know when I am struggling myself I tend to either leave the groups or I turn off notifications so that I don't see posts on my feed, sometimes it gets too much dealing with your own health issues and being privvy to others' too.... it can feel like you just can't escape your disease, and sometimes you go to facebook to just escape life and it is hard when you are surrounded by your reality online too.
For me, I struggle a lot of times with my mortality and hearing/reading about a member of the group who passed away is really confronting. Friendships made online are real and just as much valid as real life friendships, so it can be hard at times when a friend passes away.
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#4. Ask your Doctor, Nurse, Case worker, Counsellor or Social worker for local support:
Otherwise you could consider making a flyer (canva is a great place to start and east to use) and you could advertise your new group in the paper, on noticeboards or even online in local groups!
The above suggestions are just a few ideas I have used on finding support after a new diagnosis, if you have any suggestions feel free to let me know in the comments below!
I know that a new diagnosis is hard and can come as a shock but googling your diagnosis or illness will only cause you more upset and harm you, these are ways I have found support after a new diagnosis that is not only positive and supporting but it is constructive as well.
Dr Google doesn't always have the right answers and can lead to damage or traumatising you, which isn't what you need when facing a new diagnosis.
Take a deep breath and big hugs, there is always support out there just waiting for you to find it. It might not always be an easy or quick overnight find, but be patience and perservere, someone out there at some point felt alone too.
Please be kind to yourself, this is a hard and stressful time. Take some time out for you and self care and try and do something that makes you happy or takes your mind off things. Here are some things I do for me and to add happiness to my day
If you're in hospital and are looking for things to do to pass the time, I wrote an article in issue 1: of The Ostomistic Life (pages 34-36).
This is such an encouraging and supportive post with lots of good suggestions, I wish I'd read this a long time ago but I know it'll help others :) Caz x invisiblyme.com
Posted by Caz on 29/07/2017 - 10:12 PM