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Understanding me

EDITORIAL BOARD
Dr. John Esdaile

Find out what rheumatologist Dr. John Esdaile thinks matters most to people living with RA.

How do you think those living with RA feel about its effects on their daily lives?

Throughout my career of treating people with RA, frustration and uncertainty are the overriding emotions expressed by my patients. The pain and fatigue felt by people living with RA affects individuals in varying degrees. Some experience difficulties functioning within the workplace, with mobility or tiredness issues, while others may experience muscle and joint soreness or weight loss and poor appetite.1 This uncertainty, both in terms of the severity and prognosis of the condition can be extremely worrying and disruptive.

At initial consultations, many of the people living with RA that I have seen express powerful feelings of fear and apprehension about their future. It is my belief that it is important for them to understand that it is ok to feel frightened, but also to appreciate the support network available.

Does RA affect people’s relationships?

Rheumatoid arthritis can have a negative impact on relationships, depending on its severity and longevity.2 The pain, fatigue and accompanying difficulties experienced in completing everyday tasks can isolate sufferers from their family and friends.3 Acutely, children do not understand the disease or its consequences. They merely miss the attention of their parent. Similarly, spouses may feel equally neglected. Sexual intercourse and intimacy can be limited by fatigue and pain, leaving both partners frustrated and disconnected.2

Someone living with RA may struggle to express the extent of their condition and its effects to family, friends and work colleagues, leading to misunderstanding and feelings of separation. Communication is vital and should be strongly encouraged to generate a better appreciation of the condition and its effect both on the patient and their wider personal interactions.4

I have, however, also seen cases, generally in seniors, where RA has brought people closer to their families, as they have been forced to rely on each other. Overall, I advise patients that these personal concerns are crucial areas to explore and suggest that we tackle these issues and their related problems together, to help alleviate their consequences.

What do you believe are the greatest challenges to working with RA and career progression?

The greatest challenges faced by those working with RA are issues surrounding the management of their pain and fatigue.3 These we target through treatment, counselling, family involvement and the setting of obtainable goals. We reinforce the belief that improvement does and will happen. These challenges and the impact on their career vary greatly and can depend on the sector in which a patient works. Rheumatoid arthritis is often a limiting factor in the pace of career progression, with many people living with RA being forced into lengthy absences from their jobs, part time work and possibly early retirement.

Specifically, RA presents the most difficult challenge to those working in manual employment.3 In this instance, an aggressive treatment plan is needed. Those based in office employment are easier to assist. People living with RA may experience varying levels of support from their employer depending on whether they work for a large company (with access to a range of supportive policies) or for a small company (with limited access to supportive policies). If self-employed, those with RA can, to some degree, set their own pace, given the acknowledgment of any monetary constraints. If you have reservations about employment and are worried about the effects of RA on your career, both short and long term, are seeking a re-adjustment to the demands of your role, or perhaps you are the main family breadwinner, your doctor wants and needs to know this. Understanding your employment rights is empowering and reassuring, especially if you are worried about its implications or enforcement. If your doctor is unable to help, ask to be referred to someone who can assist. This is paramount.

Communication is a crucial step to ensuring an individual’s ability to work is both achievable and sustainable. Work disability is a serious and difficult issue for people living with RA, but RA is manageable for many, although the journey varies, depending on the job and disease severity. This is achieved by proactive engagement.

What are your patients’ aspirations?

Based on my experience, apart from a cure, people living with RA strive to achieve two main goals. Firstly, to reach a level of personal acceptance that RA has altered their lives irrevocably. Secondly, to attain control over their disease to enable them to help realize their life goals, whether this is to progress in their career or to have a strong and happy family life. Ultimately, I believe people living with RA are seeking for it to be a part of their life, not to define it. Interestingly, one of the most discussed patient aspirations is to enjoy a trouble-free holiday. In the future, I hope that with help, this objective can become a pleasant reality.

References:1. Arthritis Society. Rheumatoid arthritis. Accessed May 3, 2018 at: https://www.arthritis.ca/about-arthritis/arthritis-types-(a-z)/types/rheumatoid-arthritis

References:2. Hill J, Bird H, Thorpe R. Effects of rheumatoid arthritis on sexual activity and relationships. Rheumatology 2003;42:280-286.

References:3. Ryan S. Psychological effects of living with rheumatoid arthritis. Nursing Standard 2014;29(13):52-59.

References:4. Canadian Arthritis Patient Alliance (CAPA). Inflammatory arthritis education series: Coping with your arthritis. Accessed May 3, 2018 at: http://www.arthritispatient.ca/files/4114/5185/4435/Coping_with_your_Arthritis_Final.pdf

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