Behind The Spoonie Society

My Chronic Illness Journey: Talking with Naomi Kilmany of The Undoing

My Chronic Illness Journey: Talking with Naomi Kilmany of The Undoing

When I imagined my life growing up, I definitely didn’t expect to be in chronic pain or to need a disability support pension to support myself at 22 years old. I don’t think anyone expects that for themselves. But yet so many of us have found ourselves here. 1 in 5 Australians are disabled and many of us will find ourselves needing to rely on government supports in order to live. I’m going to tell you a bit about my chronic illness journey and the process of applying for disability support pension as a Spoonie in Australia.

I started experiencing really frequent headaches from when I was a pre-teen and all throughout my teenage-hood. When my period started at 14, it was instantly really painful. Within my first few cycles, I was in severe enough pain from menstrual cramps that I had to consider skipping school and needed medical attention. Over the counter medications were never strong enough to combat the pain. I was told it was most likely just severe period pain and I was put on the pill. This helped for a while. The pain wasn’t as severe but I still experienced a lot of symptoms. As I got older I noticed the headaches becoming worse. I was often self medicating with things like panadol and I got accused by people around me of being addicted to pain killers. I even gave myself stomach ulcers from trying to self medicate the pain I was in. I eventually came off the pill because I felt uneasy about being on it for so long from such a young age. I was in pain all the time growing up, but having a chronically ill mother and other chronically ill family members, I just thought that was normal.

It wasn’t until I was 20 that my physical health hit a peak in severity and began really concerning me. It was my partner’s birthday and I woke up with a migraine. I knew what having a migraine felt like because I had experienced them sporadically throughout my childhood and I had also grown up with my mother who has suffered from chronic migraine her entire life. This was the first time I had to take a migraine abortive medication so that I could still attend my partner’s event. Around this same time, my periods were also beginning to become really painful again. I was being woken up from my sleep from the pain and would cry to myself for hours waiting for pain killers to kick in, praying that they would help. At this point in my life I was the fittest, healthiest and happiest I had ever been. I was studying full time and working as a disability support worker. I was attending jiu-jitsu classes and going on 10km walks, I started running. And all while this was happening my body and my health started deteriorating. That migraine turned into once a week, which turned into twice a week, and eventually I was experiencing headaches and migraine attacks almost everyday. My period pain was also becoming more severe and I was experiencing it for more and more days of the month. What started at maybe 2-3 severe days of menstrual pain per month grew to 7-10 days of the month. I couldn’t drive, because my awareness and reaction times from the migraines were so slow. By the time I commuted to uni and walked around campus with my backpack, a migraine would have already been triggered. The lights in my classrooms were intolerable and I couldn't string my words together when asked questions by teachers. At my disability support job, I had to sit with heat packs on whilst completing tasks and push through the pain in my neck and head whilst cooking, vacuuming or helping kids with their study. I slowly stopped attending my classes because I was too sick. I had to decrease my study load. I went from full time to one unit per semester. I couldn’t attend jiu jitsu or go on walks anymore. I had to quit my job as a disability support worker because I was cancelling too many shifts. Within a year I became almost house bound and was so sick I could no longer attend to any commitments.

I already knew it was likely I was developing chronic migraine like my mum. Having to process this after seeing my mum live with this illness her whole life and resenting it for so long was indescribable. I eventually got to see the neurology headache clinic and was diagnosed with chronic migraine and begun preventative treatment to try and improve my situation. I’ve since been on 4 different preventatives with no significant changes or improvements and I am still effected by migraine attacks daily.

Whilst processing all of this, I still had no answers for why my period pain was so severe. I was given opioid prescriptions to manage and was just told I just had a bad period. Now I know that there’s no such thing, but back then I was clueless. Along with the menstrual pain, I was having pain with bowel movements and urination, constipation, painful intercourse and plenty of other symptoms that I had no idea were correlated. The pain was somehow worse every month and every month I was just in utter shock at how bad it got. I didn’t know it was actually possible to experience that level of pain at times other than maybe child birth or a terrible accident, and it was happening every month. During one of these cycles my partner took me to the emergency department as we couldn’t manage the pain ourselves and we needed answers. I wasn’t offered an ultrasound or any tests. I was given more opioids and sent home a few hours later with a diagnosis of dysmonorrhea (period pain).

I had no idea how to manage what was happening to me and no idea how to advocate for myself. During this time, I called an obstetrician in my extended family for some advice. He mentioned the possibility of endometriosis and referred me to see a private gynaecologist he knew. During my appointment with this gynaecologist he reaffirmed the possibility of endometriosis and recommended a laparoscopic surgery to diagnose and treat it. I was excited to maybe finally have an answer and someone that listened. A few months after this, I was booked in to have laparoscopic surgery at a public hospital. They found endometriosis in 3 places and excised it. I was shocked, but incredibly relieved. I finally had an answer for the debilitating and excruciating pain I was experiencing every month, alongside the migraines.

Within a year I was completely disabled by these chronic illnesses and unable to work. I spent most of my time at home and started really struggling with isolation and a lack of purpose. Spending all of this time alone trying to manage the pain and symptoms of these illnesses effected my mental health dramatically. I started documenting my experiences on TikTok to have a place to vent, and I soon started realising that I was surrounded by a community of like minded individuals struggling with the same issues.

Obviously a big factor that I was now having to consider through all of this was the financial burden of being unable to work. From the age of 12 I had always had a job. I loved working. I loved being around people and having something to attend to requiring some form of discipline and routine was so good for my mental health and wellbeing. Losing this was devastating. I soon realised I had no choice but to apply for the disability support pension. I was already on youth allowance to help support me whilst studying, but with the financial burden of increasing medical costs and needs, plus the cost of living crisis itself I was drowning and desperately needed more support. Applying for the disability pension wasn’t easy. The process took 10 months and was spiritually, emotionally and physically draining. Having to not only recount all of the things that have made me disabled, something I was already finding really hard to process and come to terms with, but having to try and prove this to a government body was really difficult. I felt pretty humiliated for having to even consider this for myself. It’s not something I ever imagined or wanted. It’s not something any of us imagined or wanted for ourselves. But my pelvic pain was becoming chronic and I was now experiencing endometriosis related pain daily, as well as the migraines, I had no choice.

When I shared these experiences and feelings online, I wasn’t surprised that I was met with a few people who felt as though I was “faking it”, that being chronically ill is a trend and I’m just lazy. This reaction was definitely exacerbated by the fact that I, like so many other spoonies, am invisibly disabled. But what was more so much more important and made the biggest impact on me were the hundreds of people who were engaging with my videos sharing the same experiences, and asking me for advice on the disability pension process. You would be surprised at how many people have probably had the exact same thoughts, feelings or experiences that you’ve had.

Asking for help might not be easy, but we deserve it. As disabled people we deserve to be supported, we deserve to feel seen, we deserve to feel heard, even if our struggles can’t be seen from the outside. I’m happy to say that I have since been approved for the disability pension and I now have the stability I need to access treatments and services that I didn’t have before. Going through the application process whilst grieving my independence and health whilst extremely difficult, was absolutely worth it and being on disability has been a necessary and vital part of my healing journey.

If you’re reading this and you’ve resonated with my story in some way, and you’ve also lost the ability work then you might be eligible!

If you’re interested in accessing the Disability Support Pension in Australia, you can start by having a look at the accessibility requirements here on the Services Australia website. You should also have a look at the Impairment Tables, this is what they use to assess your condition and whether or not you’re eligible.

Once you’ve had a look at these things and feel as though you’d like to move forward, you can easily start a claim through the Centrelink app or MyGov website. They will tell you examples of what kind of medical evidence you need to supply. You should submit anything that feels relevant and can prove that you have a chronic health condition or injury that renders you disabled and unable to work. Once you’ve submitted this claim and all of your evidence they may offer to put you on jobseeker whilst you wait. The waiting period for your claim to process and reach the interview stage can take a long time, sometimes up to 10 months, so be patient with yourself and prepare yourself for this wait.

It’s important to look after yourself through this period and make use of any other supports you can access through this time. And remember, there’s plenty of people online that can help and understand what you’re going through! There are also Facebook support groups that offer support and advice for anyone completing the disability pension process which can be a great help.

If you advance to the interview stage you will have an assessment over the phone by an appointment Services Australia officer, this is called the Job Capacity Assessment. It’s useful to have another look over the Impairment Tables in preparation for this. Don’t be too nervous for this part! Remember that they are there to listen and to help you. If you pass this stage you will be referred to have another assessment over the phone by a GP from their appointed services Sonic Health.

If your claim is rejected at any point but you still feel you are eligible, don’t give up! You can appeal this outcome and there are plenty of people who can help you through this process.

No one chooses to have this life or to endure this suffering. But we do get to choose what we do with it. And we deserve the same accessibility and opportunities as everyone else. So don’t doubt yourself or your needs and keep advocating for yourself, no matter how hard it is. 

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