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Feeling Ostomistic
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:
If you felt you missed what had been said in your initial appointment, consider making a second appointment and bring a support person with you - in case you zone out again and struggle to rememeber what was said. You could consider recording on your phone so you can take notes later, or you could even take a journal filled with questions to ask away and write it all down.

When I was told that I had bowel cancer it was during my lunch break at work and I had just quickly ducked off to get my colonoscopy results back, presuming it was going to be another "all good see you in 6 months" type of appointment I wasn't phased and didn't take anyone with me. I did zone completely out during the consult and returned to work barely holding it together. I didn't remember anything after the initial words were spoken.

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.

By being referred to a health specific nurse, she not only became an invaluable aid and support but also someone who really knew her stuff and you felt safe in her hands. She guided me through the surgery, what an ostomy is, how it works, what a stoma appliance looks like, how it will feel, how or what would change... she also told me the support that was available to my husband as well as there being a local support group too. 

You could even find value in speaking to a professional like a counsellor or social worker to help you process your diagnosis, help you to even find the support networks available (they might be inclined to search for you) and there might even be financial help available as well (that you otherwise wouldn't know to access).

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:
If you want to learn first-hand experience, or if you want to know how life will be like for yourself or maybe a loved one, then lived advice is always going to be the best. Not only can you learn about how it is to have the disease and any issues pertaining to life, but you can also know how to tackle that issue head on. You might find that the lived experiences to help inspire you on your journey. 

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?
Through blogs of course! A lot of people at different stages of their illness, diagnosis or life decide to start a blog. Sometimes the blogger is even happy to answer questions or allow you to reach out. Search (on google) your illness followed by blog and it may show up with blog names. Otherwise, sometimes on official sites of a disease there are links called "resources" where bloggers might be listed. You can always search youtube as well for any vloggers (video bloggers) who might talk about their health issue or journey.

HOT TIP:
If you are on social media consider searching via the hashtag use too, to help you find and connect with people sharing their lives online. For me if I were wanting to search for someone with an ostomy to reach out and connect online I might try: #ostomy #ileostomy #stoma #youngostomate #nocolonstillrollin. I could always try disease specific # too like #_diseasename_ e.g #cancer #bowelcancer #fap #thyroidcancer #endometriosis.

Keep in mind:
Some bloggers, like myself, talk about life authentically and openly with a chronic illness and disease. We don't do this for sympathy or to look for attention by showing the bad parts of our life. I know for me personally, I would find more value in following and reading a blog that talked about the good and the bad as opposed to sugar coating everything - it wouldn't be of much help if my lived experiences were censored. Just keep in mind that it can be raw, it can be emotional, it can be confronting but it is real!

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#3. Search on facebook for groups or support groups:
You would be surprised if there isn't a group out there for your illness or disease, with there being 1.94 billion users (according to Facebook's recent report), there would be someone out there with your disease looking to connect with others online. I thought when I was first diagnosed with FAP that there wouldn't be a support group, but even though it is a rare disease there are still plenty of people online looking for support.

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. 

HOT TIP:
If searching online don't limit your searches to a specific location or country, this will give you more chances for getting results. And don't be afraid to search on the 2nd and 3rd pages of google too.

Keep in mind:
With the group situation there are people in there from all stages of their illness or health journey, some might have more symptoms than others or might live with other co-morbid diseases. Some people posting could be posting about their current situation but that doesn't necessarily mean that it will be yours either, so don't let that scare you off from posting. Everyone is new to their diagnosis or reality at some point, so don't be afraid to ask for help or ask what other's stories are, just remember they won't all be the same story to tell.

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:
Finding local support can sometimes be hard, not everyone likes to be social and meet face to face or you might find a lack of local resources or people with your illness if it is rare. Your Doctors, Nurses, case worker, counsellor or social worker might be privvy to other support networks that you aren't aware of. If there isn't anything specific relating to your illness, consider asking your doctor or nurse if they have any other patients looking for support, like a buddy program or start your own support group!

You could offer to write an open letter that your doctor or nurse could pass on to local patients who might benefit from some peer support, be sure to leave your contact details on the letter... You could help be the change that is needed locally! Imagine, if you are struggling and feeling alone the chances are others are too!

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).

Posted by: Talya AT 12:46 am   |  Permalink   |  1 Comment  |  Email
Comments:
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

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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