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.
Trying to find my way
People had (and still have) no inkling of the emotional and psychological impact of rheumatoid arthritis. I was a young girl who had just escaped an abusive family home and was looking forward to starting life afresh. I was trying to make my own way, but I struggled to understand what it meant for the rest of my life.
Doctors, colleagues, family, and even strangers gave me various gems of advice, including ‘study is a waste of time’ and ‘just give up your career’. To be told that my life was over or not worth living was painful. They didn’t understand why I was angry and had no idea of why I needed answers. They seemed confused at my rage. But my anger was the only way I managed to not give up right then and there.
I was left to my own devices. I sought answers at Arthritis Australia. After I discovered that everyone at the local group was at the end of their careers and life, I started a Junior Arthritis support group. Those who joined expressed similar sentiments: they felt alone, and agreed there was a lack of understanding from peers and only limited support available. The older people had no relevance to us at all, they were not role models whose lives any of us wished to emulate. The group was successful, and Arthritis QLD eventually started a similar program.
I also decided to do my own research. I studied anything and everything – crystal healing, aromatherapy, life coaching – to see if I could help myself. I found that while rheumatoid arthritis was common among young people, there was limited support catering for youth. Worst of all was the advice that was all too common… Terrible words like ‘just change what you do with your life’. The overwhelming message was: just give up.
I refused to believe that, and over time I have proved them wrong. Not one person early in the diagnosis asked me about me, what I was going through and how I was feeling. I think it is why I am self sufficient. To this day, I do not count on anyone.
Thinking of suicide
I was working for a local engineering design company when I was diagnosed. It was only the second job I ever had. My colleagues saw the changes in me – the physical issues, my tiredness. I was honest with them about what I was going through. It didn’t occur to me that my employer wouldn’t be supportive. Without warning, my boss sacked me on Christmas Eve. He told me I should focus on getting better. Three months later the Disability Discrimination Act was legislated in Australia. I was advised not to sue for damages, although I think this was because the local lawyers were all on good terms with my former boss, and they did not want to take my case. This was my first – but unfortunately not my last – experience of discrimination.
Without a job, I had to move back home… the home I had been desperate to leave. My mother had recently been diagnosed with schizophrenia and was in and out of mental health clinics, my father was not coping, and my two younger sisters were trying to finish high school. It was not a healthy environment for me to be in. It took several months, and I moved out as soon as I could.
But the experience sent me into a spiral. It was at this time I first thought of suicide. After everything I had been through in my childhood, it was arthritis that caused me to finally asked the almighty question, ‘why bother at all?’
I was angry because I felt as if my life had been ripped away, and the only advice I received was to just give up.
I was told to see a psychiatrist. I did. He sat there and stared at me for $200 per hour to wait until I would talk. He told me I was depressed, and gave me a script for an anti-depressant – without telling me that it was. He said it would help me sleep. It did. I took one tablet and slept for 26 hours. I found myself in a black hole. Looking back, it may have been a side effect of the drug. I saw black, I breathed black, I was nothing but black. I sat for three days. I didn’t talk, I didn’t eat, I didn’t move. I don’t remember anything but a blindfolded darkness without light or life.
At some point during those three days I made a decision to ignore those around me and make my own life. I was tired the lack of support from my family and the system. I was tired of their negativity. I decided I ‘would bother, but I would do so on my terms’. And so I set out to educate myself about my disease, potential therapies and even my own mind set.
Need less to say, after that experience I didn’t go back to the psychiatrist. But the blackness found me again, on a much greater scale, when I was 30. I was hospitalised for six months, and I believe it was because I gave into depression. I was so ill I had to learn to walk again, and they housed me in a palliative care unit while I did so. Palliative care is for the elderly and the infirm, who are placed there until they pass on. It is no place for young people. It was another life lesson.
I received disability benefits during that period, but I went back to work as soon as I could. Independence is one of my core values and I loathe relying on others.
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.
Understanding what has changed
The public's understanding of rheumatoid arthritis has barely changed since I was diagnosed. And the education or support I receive from doctors has not improved either.
I recently saw a doctor to treat an ongoing flu and asthma attacks. I asked him to check whether the corticosteroids he prescribed were appropriate to take given the chemotherapy treatment. He was patronising and said ‘I think that’s a little bit of an exaggeration, don’t you?’ He just wrote the script and didn’t check the drug interactions on the MIMS Australia database. I took the script, did my own check, and managed the outcomes myself.
As for the support services on offer… I have found that most on offer are about enabling people to feel sorry for themselves, instead of empowering them to take control of their disease.
A part of me thinks I should step up and be the voice that is missing… but I don’t want to focus my life on the disease. I prefer the mind set I have now, where I focus on living my life.
My advice to others with chronic disease is to educate yourself. Know more than your doctors about what you have – and by that I mean real education, not just the results of a google search. Read medical journals, scientific articles, books written by specialists. The more you know the better position you will be in to engage with, and make better decisions about, your own health.
Explore alternative medicine with a healthy dose of scepticism. Some will alleviate your symptoms, most won’t. Don’t let anyone stop you from trying something, but don’t be disappointed when it doesn’t work.
Get rid of toxins from your life as much as you can. Look after yourself and your environment.
Make your life a flexible as you can, in terms of work, play and people. Make sure those in your life understand why you might be fine one day and not able to walk the next.
Stay away from people who refuse to understand your circumstances. You will save yourself a lot of trouble by keeping them at a distance.
And keep moving, because it will be much harder to start again. Flex those joints whenever you can. I am currently writing a book called Just Keep Swimming! It talks about why it is so important to keep moving… I think the ability to just keep moving is the most important lesson I have learned.
More than two decades after my diagnosis, I am proud of how I have handled myself. I have filled my life with more adventures that most. I have jumped out of planes, flown helicopters, raced cars, studied, had a fulfilling career and travelled around the world. I am not inspiration porn, I am an example of what can be achieved with the right mind set and a healthy dose of determination.
Rheumatoid arthritis will only limit you when you let it. There is pain: accept it will always be there. Stay positive, have goals to live for, and surround yourself with people who care.