Roselie Freeman – My Own Story
Two years after having had a stroke at only fifty four years old, I began to have joint pain and my doctor suggested I see a rheumatologist. The specialist diagnosed me as having rheumatoid arthritis and told me I would have to re-evaluate my life. I figured he was exaggerating. Lots of people get arthritis as they get older I thought, what's the big deal?
Even though I am a psychotherapist and frequently deal with other peoples' grief, I did not for one second identify it in myself. I did not and could not, see that this was my own denial - the first stage of grief. If anyone had suggested at the time, that I was in shock and denial I would have told them in no uncertain terms that they were wrong!
Over a period of months I began to comprehend what the specialist had meant. Pain escalated until it became so intense that I could not move without help. Sometimes I lay in bed at night without being able to move at all. On occasions I had to call my daughter, or a friend, to come over and help me get dressed. There were times when I could not open a milk carton or a jar. From time to time my jaw was so out of alignment that opening my mouth wide enough to get food in was problematic. Consequently at those times I would not eat solid food. RA was in virtually every joint in my body. Every movement was agonizing.
I became very cranky, biting my friends' and family's heads off for minor infractions and even for nothing. Whether this was due to cortisone, or being in almost constant pain, was hardly the point. That my friends and family put up with me without complaint, says much about their generosity of spirit. I was angry with them. I was angry with the illness, I was angry with the whole world. I still did not relate these feelings to grief issues, even though rage and anger are indicative of the next stage of grief.
At Cedar Court rehabilitation hospital I was asked if I wanted to see a psychologist. I stated, firmly, that I didn't need to. On several occasions the specialist asked me if I was seeing someone to help me work through living with this illness and I would mumble something that resembled an answer that I hoped would satisfy him, believing that I really didn't need any help. After all I am a psychotherapist and my closest friends are practicing therapists, what else could one ask for?!
The specialist had prescribed cortisone. Neither of us was happy about this long-term because it depletes the bones of calcium, as well as other unpleasant side effects, plus I have osteoporosis. It certainly prevented the pain and swelling, but we were anxious to find something to replace it. So began the long and arduous drug journey. My intake of cortisone fluctuated with the effectiveness of each particular drug. And so did my grief issues. Every time a drug seemed to work I would feel completely well psychologically and physically. And every time that drug stopped being effective I would repeat the grief cycle all over again. I was going round and round in cycles of pain and grief.
Several times I could not cease a particular drug and start a different one until I had used the previous drug for a specific period of months, a policy dictated by Canberra because of cost. One drug helped enormously with the pain but had dreadful side effects for me, one of which was that I lost roughly 75% of my hair. With a face already bloated from the cortisone my hair loss was devastating. Several acquaintances did not recognize me, indeed when I looked in a mirror I hardly recognized myself!
I have now come to accept that one cannot do this on one's own, no matter how supportive one's friends and family. I believe that professional help is essential. Chronic illness needs to be worked through on an emotional level. The grief needs to be processed with someone who fully understands all the stages of grief. Someone objective. Much as my friends were wonderful and understanding and I could talk to them about how I felt, naturally, it distressed them when I was so ill. I felt I needed to be seen to be recovering both for them and for me. I couldn't allow myself to incessantly tell them how I was really feeling. I felt I had to keep up a positive front so they could see I was coping, when sometimes all I wanted to do was scream. They were invested in my getting well and I wanted to protect them.
Although a lot of the time I was too ill to work, I worked as much as I possibly could in order not to focus on the pain. For me, this helped a lot, focusing on other peoples' problems rather than my own. I also meditate — not as much as I should — but it certainly helps with the inevitable stress level. People are unique and everyone has to find strategies that are useful for them. However, I believe that there are some essentials. Firstly, a doctor in whom one has complete trust, secondly, a therapist who understands chronic illness and with whom one has rapport, thirdly, meditation and fourthly, some activity that gives one pleasure (this can be hard to find at first).
After fifteen months we finally found the medication that has helped me. I have to inject it and as someone who used to be phobic about needles it was a challenge at first, to say the least! But my strength is at last returning and I have been back to the gym for the first time in over a year. I look back on the past year and remember times when I truly felt it was not worth struggling on. The times that I just wanted to give up and end it all. I am so glad that I didn't. I am now able to appreciate that there are people far worse off than I am, but before reaching that point I needed to grieve. Whilst a “positive attitude” is important, grieving is an essential process and if ignored or denied will not go away but only be postponed. No, my life will never be the same as it was before RA, but I am OK with it as it is. I am even able to be grateful that I have nothing worse. However, it takes time to reach that point of comprehension and acceptance and the path can be very rough. My anger and my despair were part of that path and I can only believe that as a psychotherapist it has made me more compassionate and understanding of other peoples' pain, both physical and emotional. It has made me more attuned to the process of grieving, the absolute necessity and importance of it. It has helped me on my journey of recovery
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