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Patient information is not enough!
- Kathy Bairstow (11 August 2008)
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Kathy Bairstow, Snr Advice & Information Officer Epilepsy Action LS19 7XY
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Providing Information for patients I felt an urgent need to respond to this article, as a person with Sjogren’s syndrome, who has struggled for several years to come to terms with this illness. The reason for writing? Finally, I believe I am coming to terms with this diverse and often unpleasant ragbag of symptoms. I had had joint problems for many years, tendon problems more recently, eye dryness, blurred vision, dry nose, dry ears, periods of extreme fatigue, and even more recently, very dry skin and genitals. Of course, I had been to see my gp and various specialists over time, but usually just with one or two of these symptoms. IBS and reflux were also on the agenda. The doctors were always kind, considerate and sympathetic, but I always felt like a heart-sink patient and began to become extremely anxious about seeking advice. I had been told I was depressed, and possibly, I was – not surprising really, as I was struggling with getting through each day.. And I began to feel my illness was ‘all in the mind’. Not surprising, I also acquired the label of ‘anxious patient’. I also developed some lung problems in that time – shown on a CT as bronchiectasis, and then asthma. After becoming particularly frustrated at my poor health, and as I had health insurance, I badgered my GP for a referral to a rheumatologist. This was to be my salvation. The day of my consultation, I picked my husband up from work and we went together to the clinic. I was a nervous wreck, expecting to be told, “It’s a bit of wear and tear, get on with it.” After a thorough examination and complete medical history, he pronounced the words - ‘You have Sjogren’s Syndrome’. I could have kissed the man! He also diagnosed two forms of osteo-arthritis, and discussed various treatment options. Just as importantly, he gave me an information sheet from the Arthritis and Rheumatism Council (www.arc.org.uk) and one from Arthritis Care (www.arthritiscare.org.uk). I walked out of that consultation a new woman! Of course, that’s not the end of my tale. As we all know, people cope with a diagnosis in lots of ways, and go through the various stages of grief, feelings of loss, anger and eventually acceptance. Except, for a year, I really didn’t feel I was ‘accepting’. The medical information leaflets were wonderful, but I needed to speak to other people with Sjogren’s, and not as part of an expert patient group, or telephone helpline - just other people who understood the social implications of an unpredictable condition. (As my health could, and does fluctuate from one day to the next, I have had to cancel lots of social activities, losing friends in the process – who wants such an unreliable friend?) Feeling particularly unwell and unloved one weekend, I searched the internet for ‘support for Sjogren’s’ and a wonderful site from the USA (sjogrensworld.org) was revealed to me. Cautiously, I searched the site, read some posts and thought Wow! these are people like me. It was a revelation, being able to read stories so similar to my own, but even better reading of treatments – prescribed and common-sense self help treatments, that I had never considered. Four months on, I’m a very proud member of this group, where I learn from others, and even offer advice to others, and I feel complete again. I know that health care systems are different in different countries, but that doesn’t mean that people’s experience of living with a chronic condition is necessarily different. Why am I writing this? Well, I work in a health related field and offer advice and information to people about a particular neurological condition. I talk to lots of people, and point them to websites about particular issues of interest to them, and send them information leaflets. However, I don’t have that condition, so I don’t fully understand the implications for those individuals concerned. Our organisation also has an online forum, and now I make extra sure that people who are struggling, are told about this – what better way of coping, than communicating with like-minded people, and hearing of their experiences. I think my doctor will notice a difference in me. When I was experiencing lots of different symptoms, I began to wonder what would go wrong next. I also felt fearful about what the future would bring. Being able to speak to other people with Sjogren’s, I now know that most of my symptoms are from one syndrome, which is a big relief. Speaking with those knowledgeable people means I am also less likely to bother my lovely GP – except of course, if something new presents itself. By the way, I’m not knocking the expert patient initiatives. I have tried repeatedly to go to one. As I work full time, and they are usually only available during the day, that’s not an option for me. Anyway, while pacing myself is now mandatory, I want to use the energy I have for spending with my children and grandchildren, rather than travelling to a group. Thank you for this article. It made my day. Competing interests: None declared |
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