Becky Paroz

Redland City, Queensland

Becky is 41. She grew up in a dysfunctional family environment, exposed to alcohol-fuelled violence from an early age. At 18, when she was already living away from home, she was diagnosed with rheumatoid arthritis and lupus. She was told she should expect to be in a wheelchair by 24. After flirting with suicide, Becky has defied the diagnosis – although in pain each and every day – and lived another 23 productive years (and counting).

 

Navigating a diagnosis without a support network

The onset of my disease was sudden. I was 18, and I went from walking a few kilometres a day to and from my job and university to being unable to hold a hairbrush or manage my own buttons. I became a wizened old thing with a twisted body overnight.

The doctors didn’t understand what was wrong with me. And so my diagnosis was something of an event, and came after a series of tests that took more than three months. During those months the doctors had all sorts of theories: leukaemia, lupus, a rare form of cancer, and even ‘something in my head’. The finally checked for and confirmed rheumatoid arthritis. They also confirmed I have bouts of lupus (systemic lupus erythematosus) and I am at risk of medically induced lupus (where lupus flares up as a result of medication).

I was told that there was no known cause or cure. Both my specialist and my GP told me to prepare myself for life in a wheelchair by 24. They thought this because I have a particularly aggressive form of the disease, marked by the rapid onset and evidence of bone degeneration within the first few months. They went so far as to tell me I was more likely to die of side effects from the medication I would need than anything else.

Pain was my constant companion. And I felt very alone. It was a hard lesson: how little some people want to know about the problems of others. I realised that if anyone was going to care, it would have to be me.

I was already living away from home and I didn’t know my housemates well – I was just an extra person to help pay the rent. They were not a support system; they were not family. And my family wasn’t supportive in any case. People asked me what was wrong, but I could see their lack of interest as soon I tried to explain. It was subtle, but after a while I just got used to saying that I had ‘overdone it on the dance floor’ or whatever excuse I could think of at the time.

There was no support in terms of the daily management of my arthritis, aside from more medication. The doctors had me taking 12 different tablets per day. There was cortisone, which resulted in weight gain, fluid retention and mood swings; short and long term anti inflammatory drugs (which put me at risk of as stomach ulcers and liver dysfunction); and immune suppressants to slow down my disease progression. The immune suppressants made me incredibly sensitive to sunlight. They also came with a little piece of paper listing death as a possible side effect. They don’t include that paper anymore. It was hard, being alone and reading that.

I was also told by the specialist that if I wanted to have a child, I should consider having one at once. Her reasoning was that the older I got while using the medications, the less likely I was to be able to have children. She also suggested pregnancy might ‘help’ my disease. I was 19 at the time, newly diagnosed with a chronic disease and still finding my own way in the world without a supportive family. Having a child at that point was not an option. And given my own history of family abuse, I already knew I did not want to bring a child into the world.

 

 

Insisting on chemotherapy

In the first few years, I took all the tablets I was told to. I had incredible side effects, and was very unhealthy as I struggled to understand how to live with this disease. I ended up with blood clots in my lungs as a result of my medication. When that happened they just gave me more medication: this time, blood thinners.

One day my GP commented that I may have to stay on cortisone for the rest of my life. Given the side effects, I thought no way. And so I weaned myself off that drug. Once off that medication and after a few months with no further side effects, I started to get rid of the rest. After all, none of medications were reducing my symptoms.

I do not recommend anyone ignore the advice of their doctor, I am simply sharing what I did at a time when I felt I was not being treated in a way that worked for my body and my disease.

Instead, I read everything: scientific journals, medical papers, help guides, support books… you name it, I read it. And the more I read, the more I realised that the most important thing I could to do for my rheumatoid arthritis was to move. No matter the pain level, it was move it or lose it. I started exercising, focusing on tai chi. Over the years, tai chi has helped manage my disease without the side effects that come with the drugs. Moving is my therapy.

Five year ago, I asked my doctors to investigate chemotherapy for me after it started to gain traction in the arthritis community. I was dubious, but after years of pain the risks seemed worth it. This was my choice of treatment – the doctors did not automatically recommend it to me because I am still of child bearing age. In Australia it is an expensive off-the-shelf treatment, but if other medications prove to be ineffective in specific cases it is possible to receive chemotherapy through the PBS. I went through the process of demonstrating other treatments do not work for me, and after a bout of medically induced lupus (as a result of those treatments), I started chemotherapy.

I now receive large doses of Cytotoxin in an oncology ward every six months: each time there are two treatments two weeks apart. Simply put, the treatment turns off my immune system, reducing the progression and symptomology of my rheumatoid arthritis.

I have reservations about the chemotherapy, despite it being the best treatment I have had. There are profound risks: I have to watch my immunity around large crowds; I can’t be around people with contagious or transferable disease; I have nausea, headaches, and itches; and it cannot cure the bone deformities that have already occurred. But my disease progression has slowed.

Most importantly, I don’t have as much pain. Pain can slowly destroy your life, and when the pain is deep in your bones it erodes your will, no matter how strong you are. And there are other upsides: after my first treatment I was asked by a co-worker if I had undertaken a face lift. Chemotherapy has given me a freedom I thought I would not experience again.

I am now in my early 40s and doctors ask me how my joints are still flexible. My blunt answer is twofold: I didn’t listen to their predictions and I insisted on chemotherapy. A social worker once said that I am lucky that I am not in a wheelchair. That statement made me (and still makes me) furious. It is not luck. It is determination to keep moving, even when the pain is indescribable. It is determination to keep stretching, even when my joints are filled with muck and won’t move. And it is the willingness advocate for myself and try chemotherapy. 

 

 

Moving on from my family

These days, I have a wonderful husband, Jimmy. We have now been married for almost five years. Jimmy is an exceptional man. He doesn’t see my disease; he sees my strength. He doesn’t see the bone deformities; he sees my resilience. Few people have offered me the support that he gives naturally. He pulls me out of my difficult moments, when nothing seems worth it, and reminds me who I am. I am amazed every day that I have him.

I also have a few close friends who are a part of what I go through. They show they care. They stay in touch. They let me know they are willing to help. And they are there for laughs at any time. Having never experienced that kind of support before I think they are wonderful and I appreciate having them in my life. But I still hesitate to trust. I have been left alone before; it is a tough journey and one that I do not wish to re-learn. That is not a reflection on them, it is a reflection on my past.

In general, I have found people do not understand. I have been told eating apricot pips in the morning and drinking apple cider vinegar will cure me. I have had everyone – from a random plumber to qualified social workers – offer their ideas on how I should live. Most doctors simply want me to take anti-depressants. Of course I get depressed, I have a disease that is random, uncontrollable, and incurable! But I don’t just want a pill for it, I want answers. And at this point in time, there are none.

I ignore them all and keep doing what I know is best for me. I have chosen to manage my disease through chemotherapy – a controversial choice but one of the best decisions I have made. For me, it is better than the pills they were offering me, which were merely a control measure – they did not cure my disease and they were not as effective at slowing its progression.

I believe that while I experience pain, I do not need to suffer from it. It is a simple statement, but it has had a profound impact on my life.

As for my family… I stopped thinking about support from them a long ago. Your questions in this interview have caught me by surprise. My first response is ‘you mean there are families out there that are supportive?’

I have had no consistent support from my family since my diagnosis. My mother was forced to marry at 17 years old, when she fell pregnant with me. And my father was a selfish man. He passed away four years ago... It was one of the best days of my life when he died. I do not have good relationships with my sisters either. Apart from the obligatory ‘how are you going’ type questions, they have never asked what it is like to have a chronic and incurable disease. My mother now lives with my husband and I. I wish the rest of them the best, but I choose to have no contact with them. I have made a life for myself and will continue to live it to my rules.

As for children… I was brought up in an abusive household, and I was always fairly certain I did not want children. The medication I take means that having a child is not really an option anyway. If I were to take that path, I would need to be off my medication for a year. That may not even be enough, as I likely have systemic damage caused by my medication over the years.

My husband has a daughter from his first marriage, and he has always wanted more than one. We discussed it, but we decided that it was not worth the possible complications. And I am not sure I could live with the guilt if I were to pass on this genetic joker card to a child.