15 with chronic pain, and a life falling apart

[Kai]

Hi I’m 15 but was diagnosed with juvenile idiopathic arthritis when I was 11. It changed my life I went from being the most active and happy kid to depressed friendless and not being able to move. 
I had to change from face to face school to online. I also live really remotely on a farm so it’s hard to meet other people.

I recently had a flair in my foot, resulting in two badly broken bones that require surgery. Thing is that the pain started 5 months ago. I have been walking on a broken foot for 5 months because doctors couldn’t be bothered to dig deeper to find out what’s wrong 

I’m now in and will be for the next 3-4 months in a wheelchair meaning the few things I do enjoy like motorbike riding I can’t do.

im failing school. I can’t think through the pain anymore. Sometimes when I have to I can push the pain aside for a little while if it’s something important but it’s exhausting. I feel like my limbs weigh a ton each and my mind is jelly.

my brothers don’t talk to me. I know one of them hates I’m a lesbian and the other I don’t know why he won’t talk to me. Me and my brothers have autism adhd and a bunch of other things and my mum has always helped us so much. I never realised just how much she does but now I see it’s crushing her but I don’t know how I can help her. My dad helps as much as he can but he also runs the farm and it’s been really hard the last couple years, drought, weeds, no crop. We had a station hand last year but she’s at uni now.

Im 6 months clean of SH but each day is harder than the last. I’m failing school and my body is failing me, at my age my brother already knew what they wanted to do and had jobs as mechanics but I have no clue what I want and if my body will let me. 

im drowning in it all. I’ve tried multiple therapists but non of them helped nor have the anti depressants. I can’t put my mum under any more pressure but I can’t keep living like this.

i know no one on here can help but I want my story out even if only a few see it.

[Resilience21]

Good morning Guest_49987910

I did read your story and I really feel for you. My heart goes out to you.

You are a strong girl!!!

                             Keep living one day at a time ...

is a very strong guide and can help you day by day. This way of thinking/living can give you

strength. You don't need to think ahead, or go over the past. With this mindset life can

take care of itself in a much easier way.

Keep confiding in your Mum. Mum's are generally a lot more resilient than you think.

I will keep you in my thoughts.

Warm regards

B

[RosieA]

Dear Kai,

Good on you for having the courage to share your story here. That can't have been easy.

Although it's been many years since I was a teenager, I can understand a little of what you go through with JIA as I live with rheumatoid arthritis and ankylosing spondylitis (a type of autoimmune arthritis that can affect the spine and pelvic joints. Some of my friends developed JIA as children and have told me about their experiences.

The first thing I want to say to you is that, despite living remotely, you are not alone and there is a lot of support out there for you and your mum, including support for your mental health. One of the best things I ever did after I was first diagnosed was join a support group. It was such a relief to chat to others with similar conditions as they understood what I was going though physically and mentally. Here's a list of all the organisations and groups I can think of.

The Juvenile Arthritis Foundation of Australia (JAFA) has a Facebook group for parents and teens plus a lot of resources on their website.  https://www.jafa.org.au/

Juvenile Arthritis Parents and Families is an online support group provided by Arthritis Queensland, for parents of children and adolescents who suffer from juvenile idiopathic arthritis (JIA). The group is open to those living in Australia. https://www.facebook.com/groups/1454237308213914

Musculoskeletal Health Australia has a Discord chat group for teenagers with JIA. https://muscha.org/msk-kids/. They also have a national helpline that is staffed by nurses. https://muscha.org/helpline/

You mentioned that you have tried many specialists. Does that include a paediatric rheumatologist? There aren't many of them in Australia so getting an appointment can be tricky. I believe most of them offer telehealth appointments.

It's concerning that your doctors did not pick up on your broken foot and that you are in so much pain from your JIA. It makes me think that you might not be getting the best standard of care or treatments that could make a huge difference for you. The Australian Rheumatology Association has information on the current paediatric medical treatments available for JIA and related conditions. https://rheumatology.org.au/For-Patients/Paediatric-Medication-Information

The ARA also has information about the standard of care people with JIA should ideally receive. You can download a practical JIA Consumer Care Guide there as well. https://rheumatology.org.au/For-Patients/Clinical-Care-Standards

I don't know of any support groups for LGBTQI+ teens but I'm sure they exist and you may find them via this website.

Finally, I think it's important to know that most people didn't know what they wanted to do with their lives when they were 15. Many of us change careers several times throughout our working life so it's ok for you to not have a specific career in mind. You already have great computer literacy and are used to working remotely. Those skills are highly transferable across many industries and may also lead to jobs that don't even exist yet.

Hang in there and feel free to message me any time.

[therising]

Hi Kai

I'm wondering whether there's been any discussion about breaking the pain cycle. When there's no relief from pain, it can start to mess with us in physical ways, mental and emotional ways and a whole variety of other ways. I imagine you may have forgotten what it's like to live pain free. Perhaps talking to your parents about looking into ways to break the pain cycle could offer you all some sense of relief. Who or what would be able to do that (what specialist, medication etc)? When pain becomes our only focus, based on the intensity of it and it's ongoing nature, not being able to focus on anything else can definitely feel heartbreaking, depressing and even physically exhausting. While pain is not easy to manage, pain free periods of time in between can be something that offers a difference.