Life is Not a Fairytale
Tess talks about their life as an Autistic, Aboriginal person with disability in rural Tasmania.
Content warning: Mentions violence and feelings of depression.
Tess lives on a dairy farm in far north-west Tasmania with their husband and two young daughters. Tess is a late diagnosed autistic and is also the mother of a child on the spectrum. They also live with a genetic disorder called Ehlers-Danlos Syndrome which affects joints, tissues, skin and organs. Tess also identifies as Aboriginal.
Tess has a professional background in counselling (private practice and sexual assault), has sat on the Board of Directors of an autism support organisation and has in the past sat on the Board of a family violence organisation. Tess is an Advocate for Change for Engender Equality, Tasmania’s statewide service for people experiencing family violence and is passionate about social justice and advocacy for those living with diversity, particularly autistic women and girls, people living with disabilities in rural areas and survivors of sexual and family violence. Tess manages a Facebook page to support autistic girls and women and those who know and love them, called Neurodiversity Goddess. They also manage a support group for over 2000 women with Ehlers-Danlos Syndrome.
When Tess is not advocating in the areas of her passion, they are fighting for a spot on the couch with their sausage dog or hiding in the forest in the Tarkine recharging her batteries, pretending to be a viking, and dreaming about being a Forensic Psychologist.
I don’t think that my life was ever going to be smooth sailing. Now, this doesn’t sound like the way to start a positive story does it? I don’t say this because I am a negative person, but I have realised that I have had to accept this fact, or I would have given up a long time ago.
I am an only child, who grew up in the government housing area of a small rural town in the far north west of Tasmania. My parents were unemployed for most of my life. My mother has lived with a disability since her teens. Both of my parents were on a disability pension in their 40s. I am also a survivor of family violence.
I was a top of the class student throughout school, making the top 2% of my year academically, but at only just 16 years of age I left year 12 for a job which enabled me to move out of home. With that first job I left behind the opportunity to go to university and become anything I could have wanted. For the next 10 years I worked in administration. During that time period I was living in an abusive relationship, which I left when I was 20 years old.
After that, I married a great guy, and we battled with infertility for more than 5 years before conceiving our first child. Our second then came a few years later.
After I had my children my health took a major downslide. When I was 39 years old, I was diagnosed with a genetic disorder called Ehlers-Danlos Syndrome (hypermobility type/hEDS). I had had it my whole life, but it finally started taking its toll in my 30s. In the time leading up to this diagnosis I was experiencing debilitating joint pain, joint dislocations, gastrointestinal issues, gynaecological issues and my immune system was struggling. At that time, I was working as a counsellor in private practice and the pain and fatigue become so incapacitating, I had to give up work.
If you look at me on the outside you see the picture above. What you don’t see (most days) is the multiple health issues and disabilities I have. It is a challenge living with invisible disability because of the assumptions people make based on what they see. I have been diagnosed with Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), Coeliac Disease, Fibromyalgia, complex post-traumatic stress disorder, endometriosis, cervical spine osteoarthritis and spondylitis, asthma, gastroparesis, interstitial cystitis, hemochromatosis, migraine, reflux, temporomandibular joint dysfunction and chondromalacia patella. Most of these health conditions are caused by EDS and its multi-systemic attack on my tissues, joints and organs.
Two years ago, at age 41, I was late diagnosed as Autistic. To many, a diagnosis like this may feel devastating, but for me it was empowering because it solved many mysteries and confusion for me for a lifetime of knowing I was different, but not really knowing why. Around the same time, my six year old daughter was also diagnosed with Autism and with Ehlers-Danlos Syndrome and multiple other health conditions. We are in it together.
There have been many times during the past five years where I have experienced grief, sadness, despair, self-pity and feelings of sheer helplessness. My career and life have panned out nothing like I envisaged. I pictured myself living happily ever after, with perfect health, the perfect job and healthy children to the end of my days. I have had to let go of that picture. After fighting inner struggles over and over with each new diagnosis, every additional surgery and setback I finally surrendered. By surrender, I don’t mean give up. Quite the opposite. It was when I finally surrendered that I began to find power and meaning in the life I was given.
I connected with my disability community. I found others with disability and similar conditions. Through talking to them I learnt that I wasn’t the only one who had experienced poverty, family violence and disability. I wasn’t alone. As my connection to community grew, so did my passion to help others on their way. I have chosen to channel my pain, grief, anger and despair into making a difference for others.
I started a support group for women with EDS to navigate sexual issues, relationships and gyno issues. I started a Facebook page for autistic girls and women and those who know and love them to raise education, awareness and acceptance. I have volunteered for organisations supporting disability, aboriginal people, family violence and sexual violence.
And now, I am regrouping and pondering what else can I do to bring change for people with disabilities and those affected by the intersectionality of gender, disability, class, race and sexuality. I want to help people see their worth, strengths and ability in amongst their difficult challenges. And what an exciting journey I hope this to be!
If you are thinking about suicide or experiencing a personal crisis, help is available.
Call Lifeline on 13 11 14 or chat to someone online (external link).
If you are affected by violence you can contact 1800RESPECT for counselling, support and referral.
Call 1800 737 732 or chat to someone online (external link). If you are in immediate danger, call 000.