I only live life a little bit. Not to the fullest, not with gusto and excitement. I live a life that I never planned for. I have a beautiful caring loving husband and two beautiful daughters, but they only get a little bit of me and this is not what I planned.
I did all the things that every young women does. Finished school, went to university, got a great job and traveled the world. But I couldn’t work out why I never had as much energy as everyone else. I was always tired. Then in 1998 something weird happened. I got a severe ear infection. I’d never had one in my life and the pain was horrendous. I was treated with antibiotics and steroids. But then it got stranger still, that year I had another four ear infections. Three years and 15 ear infections later, I saw an ear nose and throat specialist, but he could find no reason why I kept getting infections.
So I carried on, but just didn’t feel “normal”. Over the next ten years I had up to 50 ear infections and the infections were so bad that I was hospitalised on 3 occasions. I felt tired, had joint pains and just felt useless. I had my daughters by this stage and I couldn’t keep up with caring for them. I thought I was pathetic and lazy. Doctors handed me out antidepressants because they said I was stressed. One doctor told me I was having panic attacks. I had never had one in my life. I thought I was crazy and that the doctors thought I was wasting their time. Neurologists, rheumatologists, endocrinologists and ear nose and throat doctors dismissed me. Very few listened to me and very few spent more than 15 minutes examining me.
My health really started to decline in 2011. I started to get awful pains in my knees and feet and found it hard to walk. All this time, doctors told me I was fine. So I kept telling myself I was useless as a wife and mother. I can’t get through a day without having to rest. I tried to be the mother I imagined I would be, taking the kids to the park, going to mothers groups, hosting BBQ’s. In the end I couldn’t do those things. I felt a failure and I became isolated.
Then in February 2015, in the middle of Cyclone Marcia (we live in Rockhampton), I got another ear infection and was hospitalised. But by now something had changed. I got diagnosed with autoimmune haemolytic anaemia. I was treated with high dose steroids to force the anaemia into remission. All was going well and my anaemia was improving when I got another ear infection. This time my Ear Nose and Throat specialist was on leave so I saw another doctor. He looked at my ear and almost immediately diagnosed me with relapsing polychondritis. He was stunned. He had never seen it before. I didn't care what he thought, I just wanted the pain to stop. He could have amputated my ear for all I cared.
I was so naive. My new specialist said this is a very rare autoimmune disease that affects the cartilage throughout your body, it is life threatening. I was sent to a specialist in Brisbane who told me that this disease can make me go blind, deaf and it is progressive. It can attack the cartilage of the trachea and the larynx causing you to stop breathing. It also attacks the heart and kidneys and the joints in your body. It had for years been attacking the cartilage of my ears.
I was put on chemotherapy to try to suppress my immune system. Being on chemotherapy is a whole different level of life. My week revolved around blood tests, chemotherapy injections and then nausea and tiredness. Motherhood for me was now completely different. I had to learn how to pace myself so I could attend functions. But the chemotherapy did help control my disease for about eight months and for some of that time I could spend more quality time with my daughters and husband.
Unfortunately, relapsing polychondritis is a progressive disease, with no cure and no definitive treatment. By January 2017, my chemotherapy treatment began to fail and I developed tracheal and laryngeal problems. I couldn't talk, swallow of breath. My heart valves had been attacked as well. I was placed on high dose steroids again and a new type of chemotherapy. The pain was incredible and there were times when I had to tell myself that I would survive this episode.
I am still struggling with talking and breathing. I don't know how they will resolve this problem. Sometimes a stent is put in for your trachea or you get a tracheotomy. But the one thing I know is even though I'm not the mother I want to be, I am fighting with all my might to still be here.
Listen: How being chronically sick turned Syl Freedman into a warrior for other women. Post continues after audio.
Autoimmune disease is the most common chronic health disease in Australia and it mainly effects women. It is more common than cancer, heart disease or mental illness. But autoimmune disease is not included in the National Chronic Disease Strategy or the the National Health Priority Areas. Autoimmune disease is the forgotten disease, and for someone like me, who's disease only occurs in 0.71 per million, we are invisible. Most doctors have not heard of the disease and I am now the expert. Sometimes that is not well received.
I am half a mother and wife. The rest of me is defined by relapsing polychondritis and it is a lonely and isolating disease to have. I have lost my sense of identity to this disease. There is nothing in my life that gives me any satisfaction or self esteem anymore, and the fact that the Federal Government gives no recognition to my disease leaves me fighting a disease with no assistance. I have to keep looking at my daughters faces to remind me that I have to fight for them, because no one else is going to help us.