cancel
Showing results for 
Search instead for 
Did you mean: 
Highlighted

Chronic Illness Support Squad

Hi everyone,

I have been thinking about making this thread for a while and I think that now is a really great time to make it due to these uncertain times, especially with a lot of medical appointments being cancelled and people being unable to receive the care that they need. A lot of people with chronic illness may also understandably be anxious about catching the virus.
I thought that we could benefit from a space on the forums to give and receive peer support for chronic illnesses and their symptoms. If you don't have a chronic illness but experience symptoms, or if you care for someone who has a chronic illness, it's okay for you to chime in too. Smiley Happy

Here are some links that may assist people with chronic illness at this time:
Support Services
Websites
humankind-relationships.com.au 
The Mighty
Helplines
Pain Link Helpline 
Medicines Line  - They can refer you to support organisations for your condition, for example.

Useful Resources
First Aid Apps
Emergency+ 
St John Ambulance First Aid 
Red Cross First Aid 
ICE - In Case of Emergency 
Apps for Chronic Illness
Flaredown 
MyTherapy - This app can remind you about appointments, let you store the contact information for your doctors, log your symptoms, results and mood and remind you to take your medications.
My Calendar  - I know this is technically a period tracking app but I started using it to track my recovery after an operation many years ago and I've since used it for a lot of other things, like medication reminders, tracking the intensity of many different symptoms, water intake, mood and temperature.
ReachOut Tools and Apps 
Tools
Question Builder
A printable pain diary
Free relaxation recordings
Free guided meditations
Resources about how to combat health anxiety
Resources about how to tolerate distress (e.g., pain)

ReachOut Threads and Articles
Let's Chat: Coronavirus 
Dealing with Medical Professionals
Weekly Wellbeing: Self-Hacking 
Weekly Wellbeing - Self-care At Home 
1000001 Coping Strategies and Distractions 
Weekly Wellbeing - Favourite Podcasts  - Podcasts are really helpful for me when I'm experiencing symptoms!
Relaxing Browser Games  - These can be good if you're stuck at home or to pass time while waiting for appointments.
Living with a Chronic Illness 
Dealing with Bad World News 

Non-ReachOut Articles
Tips for Coping With Coronavirus Fear While Chronically Ill 

Feel free to add your own resources and share coping strategies! Smiley Happy

Highlighted

Re: Chronic Illness Support Squad

@WheresMySquishy this is a brilliant idea!

Highlighted

Re: Chronic Illness Support Squad

Ahh, you're an absolute legend @WheresMySquishy! Absolutely above and beyond with the resources! Smiley Very HappyHeart I've also been looking for a thread like this for a while, I feel chronic illness often goes so unrecognized and unsupported

I'm not diagnosed with a chronic illness, but I really feel like I may be. How on earth does anyone go about getting diagnosed!? I've had a bunch of symptoms that impact my functioning lately (extreme fatigue and brain fog being the biggest problems), but every doctor I go to just dismisses it as anxiety. I know it's not anxiety!

 feel like within the last ten or so years I've never been to a doctor without them mentioning my anxiety... except when I broke my arm, but that can't really be caused by anxiety. Even when I had an infection from a cat bite that I ended up having to go spend a day in hospital for, the initial doctor I went to said I was worrying too much. Like, thanks. Smiley Frustrated

Highlighted

Re: Chronic Illness Support Squad

@Hozzles oof that's a hard one... Doctors can suck sometimes.

Option one is get a new doctor, don't mention your anxiety at first, and tell them your symptoms.

The other (which I did) is find a list of possible conditions and walk/ drag your doctor through eliminating each one until you get an answer. But if you get health anxiety/ ocd then that might not be an option..

But keep persevering. If you nag a doctor enough they'll eventually get sick of you and do their job.

Also if possible find an ally who's going to back you up, and help you do stuff that you can't do for whatever reason.

Highlighted

Re: Chronic Illness Support Squad

I know what you mean about how long it can take to get diagnosed @Hozzles! It must be such a frustrating experience for you. I think that doctors can be too quick to dismiss you if you don't look sick or pin the cause on something psychological. I really think that GPs should receive more training. Even if something turns out to be functional or they cannot find the cause of it, I believe that they should still give the patient some options to do something about it, especially if it's impacting on their life.
I can relate to your story about the infection! It kind of reminds me about what happened with my kidney stones. I was told that I wasn't in enough pain to have a kidney stone when I needed emergency surgery.
I experienced fatigue for years, but it wasn't until I saw a new GP that I was tested and treated for iron deficiency. I think the main reason she decided to test me was because I had restless legs syndrome. I feel better when I am taking my iron tablets than when I stop taking them, so I think it was worth it to get tested.
Have you tried explaining to your doctor that your symptoms are causing a lot of problems for you and having them investigated would give you peace of mind?

Highlighted

Re: Chronic Illness Support Squad

 @Hozzles That’s sounds really annoying!

 

I think I get where you are coming from, I had more severe symptoms as a result of a birth defect I’ve had all my life and has been mainly addressed with surgery. I went to GP for more recent symptoms. I thought it might have had something to do with my condition. I was really quiet at the doctor because I was feeling awful. They kept asking if I had mental health problems (Which I didn’t) They kind of assumed that because I’m an adolescent with similar physical symptoms to stress that I had mental health issues. The doctor didn’t understand my medical condition and how my ‘normal’ is drastically different to most people’s. 

 

A day later I went to see my specialist who has known me since birth, I asked him whether he though it was mental health and he said absolutely not! They are still investigating but it is likely a complication common in people with the same condition as me. It felt great that one understood! 

 

I hope that helps!! In my experience it helps to see different doctors until one can figure out what’s up. Take care!

 

 

Highlighted

Re: Chronic Illness Support Squad

Thanks for making this awesome thread @WheresMySquishy and all the links! 

 

@Dream_State I am really glad to hear that you asked for a second opinion, and from someone who knew you well. You raise a really good point that every person has their own "normal" when it comes to health, and finding a health professional that understands your history, and is open to exploring possibilities is so important! 

__________

Check out our community activities calendar here
Highlighted

Re: Chronic Illness Support Squad

Hey @WheresMySquishy , this is an absolutely phenomenal resource, thank you so much for all of the work that you've put into creating it! This is something that will be so helpful to so many people, especially as the current climate means that people may suddenly find themselves without their normal supports, having regular procedures cancelled, or facing extra challenges in social isolation when the things that normally help them to stay healthy may not be possible any more (like certain types of exercise, for example). 

 

@Hozzles  I don't have any chronic illnesses myself (apart from garden variety sinus issues and hayfever), but one of my children has a fairly rare chronic illness. Without sharing details, I can say that having a really good, thorough, understanding GP was an absolute game-changer for us. We really needed someone experienced to help to systematically work through some weird symptoms, listen to us, and refer us on to specialists when needed. 

 

It can sometimes take years for some chronic conditions to be diagnosed, especially if they're ones with fairly vague symptoms, but getting to know your own body and being a persistent advocate for your own health can play a huge role in getting to the bottom of things in my experience. 

 

The internet can be a blessing and a curse for this stuff too I find - there is a lot of misinformation and snake oil merchants out there,but there's also access to more information than ever before - personally I wouldn't advocate trusting Dr Google, but it can definitely be good to be armed with a bit of information and lists of questions to ask your healthcare professional Smiley Happy

__________

Check out our community activities calendar for April 2020 here
Highlighted

Re: Chronic Illness Support Squad

Great idea for a thread @WheresMySquishy!

I personally don’t have a chronic illness, but I do have Chronic injuries and low blood pressure.

My injuries still haven’t been diagnosed yet, but it’s probably genetic/chronic arthritis. But I shall look into those links when I feel I need them, because who knows, I might need some kind of help like that at some point, despite being quite young still. Smiley Happy
Highlighted

Re: Chronic Illness Support Squad

Hi @xXLexi_Lou122Xx! You're still welcome on this thread! Smiley Happy
I hope that you can get some answers soon! Having health problems when you're young can be a challenge. One of the reasons I decided to create this thread was to connect with other young people with experience of chronic illness. Lots of the resources I've seen online seem to be aimed towards an older demographic and some of it isn't relevant to me, at least for my conditions.

I don't have arthritis, but I'm prone to repetitive strain injuries and low blood pressure.
Having low blood pressure can be so frustrating. After my surgeries, it was so bad that I had trouble sitting up and kept having to lie down because I felt faint. It's only in the last week or so that it's been settling down. I hope yours can become more manageable! Smiley Happy