Life with Sjogren’s syndrome

by The WellBeing Team June 14, 2016

I have lived with the diagnosis of Sjögren’s syndrome for just over three years. What started as waking with a burning, dry mouth soon progressed to dry eyes, severe fatigue, joint pain and confirmation that the chronic reflux and other stomach upsets I had been experiencing for over 12 months were part of an autoimmune disorder known as Sjögren’s syndrome.

With this disorder, the body’s immune system attacks its own moisture-producing glands, resulting in decreased production of tears and saliva. Dry eyes and mouth are typical symptoms but it is a systemic disease and may cause dry airways, vaginal dryness, lung disease, skin complaints, gastrointestinal disorders, inflamed nerves and muscles, arthritis and fatigue, and affect memory and concentration. The cause is unknown but may be a combination of genetic and environmental factors, and stress exacerbates the symptoms.

My lifestyle up until this point could have been described as driven, which is not uncommon for women today. I pushed myself mentally and physically leading up to the diagnosis at 51 years of age, juggling study, work, family, house renovations and intense exercise most days. Feeling stressed was not unusual. A few health crises and emotional upheavals along the way caused occasional depression and anxiety to pop up. In hindsight, I believe either stress or a virus may have triggered my Sjögren’s.

With my Sjögren’s diagnosis, anxiety raised its head. In the weeks after diagnosis, I felt trapped in a cage of scary, painful physical sensations and was told that, while it wouldn’t kill me, my quality of life could be affected. My fear of what the future held and frustration at losing my previously active lifestyle made me grieve for my old self.

I gave up work to focus on my health. In the first weeks, I took myself to a health spa to escape my symptoms but, what do you know, the symptoms managed to find me! I wasn’t sleeping, my blood tests showed inflammation and I felt alone in this battle. I looked normal but my family didn’t understand the severity of my discomfort. They were use to a wife and mother adept at multitasking.

My path to recovery began when I was referred to an excellent immunologist. He prescribed the drug Plaquenil, fish oil and vitamin D, readily offered information on my disorder and was open to alternative therapies. It has been, and still is, a journey of healing both mind and body.

My fear of what the future held and frustration at losing my previously active lifestyle made me grieve for my old self.

My next step was seeing a psychologist, who helped me process my emotional issues. With her help, I learnt to accept the diagnosis and my new self. I began to accept bad feelings and physical sensations, to listen to my body, to take rest and not feel guilty about it, to focus on today and stop comparing myself to others. Through her teaching, I gave myself permission to feel. In allowing myself to identify and experience those feelings, I was not as scared by them and became less anxious. I became grateful when the physical symptoms backed off even a little bit, which led to a sense of wellbeing. I allowed myself to just be.

After three months, the psychologist suggested I might benefit from acupuncture by a local person who practised Five Elements acupuncture. These sessions were a blend of a short psychotherapy session and needling. He carried on the valuable teachings of acceptance. I developed a more spiritual outlook on life and started to be kinder to myself as I realised that my past internal dialogue was critical. I had felt alone in my health battles, which caused me anxiety, but both these health practitioners helped me realise I had the power to comfort myself.

At five months from diagnosis, after a few acupuncture treatments, I started to feel a subtle improvement in my physical wellbeing. I shifted my exercise focus to yoga and Pilates. I tried to rebuild my fitness with walking but found my fatigue levels were variable, so I walked when I could and rested when my body told me to. Around nine months from diagnosis, the signs of inflammation disappeared from my blood. While fatigue was still an issue, the annoying symptoms of dry mouth and physical aches and pains started to recede.

Just over three years from diagnosis, my blood is still inflammation free and the physical symptoms are much quieter. I don’t feel my old self, but I am content with this new self. My immunologist has said in six months he would consider me in remission and will decrease the dose of Plaquenil. I now exercise regularly and more vigorously and find I have fewer aches and pains if my body is strong and flexible. I still feel fatigued a bit sooner than I did pre-diagnosis, but my stamina and fitness have improved. I am mindful of my diet and try to eat a healthier, anti-inflammatory diet. I have monthly acupuncture sessions as I experience a positive effect from them and it’s a valuable spiritual check-in.

The journey has made me appreciative of the basics of life and satisfied with the now. I view Sjögren’s as a gift that has made me change the way I live my life, as I’ll go into older age less anxious, more mindful and grateful for my lot, and hopefully healthier. I would say to anyone diagnosed with Sjögren’s syndrome, feel hopeful, as you may be able to turn your situation around through positive manoeuvres. And don’t be afraid to ask for help.