Lupus SK Society Inc.

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Sylvia Higgins Memorial Essay - Medical Category Winner, 2004

This essay was written by Lynne Brochu, who is in her second year at St. Andrews College, Saskatoon, working towards her Bachelor of Science Degree in Physiotherapy. She will be experiencing physiotherapy firsthand during her two upcoming placements out in the field. She anticipates that these opportunities will assist her in deciding what area of physiotherapy she will eventually work in.

A Glance at Lupus: Helping Clients to Help Themselves

It is my understanding that Systemic Lupus Erythematosus, or lupus, is a chronic disorder of the autoimmune system (Alamanos et al, 2003). Lupus can affect every part of the body including the skin, joints, organs, or any body system including the musculoskeletal system, central nervous system, or cardiopulmonary system. Diagnosis can be rather difficult as symptoms can be vague (fever, fatigue, nausea, dizziness, stomach ache, or headache) or very specific where pain is described within one organ. Symptoms are also likely inconsistent as the disease manifests itself in a variety of ways.

Lupus is often mistaken for such diseases as fibromyalgia or rheumatoid arthritis (Litton, 2003). Lupus is a chronic disease which affects more women than men, and its cause is not known although environmental, genetic, and hormonal factors are known to play a role. Lupus is a severe disease since the pain experienced may be tremendous and the disease may lead to major cardiac events such as myocardial infarction or stroke, or a variety of secondary life-threatening complications such as kidney failure or gastrointestinal manifestations.

In my opinion, a proficient physical therapist would function primarily as an enabler or a facilitator to an individual who lives with lupus. The physical therapist would function as an enabler or a facilitator through empowering; and offering tools to such an individual for the purpose of encouraging the highest life quality possible. This opinion is based on my own personal experiences and is supported by the views of Farley Hendry, Kimberly Litton, and Kyeong Yae Sohng through the research I did for the purpose of this essay. I will express these viewpoints throughout this essay.

I do feel that the traditional or “passive” physical therapy treatment, where the client is a passive recipient of physical therapy techniques, may be beneficial to such a client in the short term. For instance, modality usage (ultrasound, interferential, hot or cold packs) to alleviate or assist in controlling pain would be appropriate for such a population. Techniques to assist with movement or mobilization would also be appropriate. However, I do feel there should be less emphasis on the passive care that a client with lupus receives because lupus is not curable. Since lupus is a chronic disease a more “active” approach to care is required so that the client has the ability to take control and manage his/her own life to the best of his/her own ability.

“Active” care would include enhancing coping skills, teaching about pain management, improving a client's self efficacy, as well as educating the client on aspects of lupus so that he/she fully understands his/her disease and the measures he/she can take to function at the highest quality of life possible. In essence, a physical therapist could combine the “passive” treatment with “active” treatment through implementing a self management program for those with lupus or other chronic illnesses. Any chronic illness presents challenges and may bring forth emotions such as fear, depression, anger, and grief (Litton, 2003). A self management program would assist in understanding and working through these emotions, as well as offer tools for long term acceptance and survival.

What is shared with a client through education is a very important factor in positively impacting on a client's life. Providing support and individualized education will become especially important. Pain management, diet, exercise, minimizing flare ups, and minimizing the symptoms experienced are all topics where a client can be empowered so that he/she will have the tools to make educated and informed decisions (Litton, 2003). The client will be able to develop strategies to minimize flare ups if they so choose to do so. Education on how to recognize when a flare up may be approaching will be useful to a client with lupus. For instance, worsening of a rash, headache, nausea, fatigue, or fever may all signal a flare up so that proper medications or precautions can be taken to lessen the severity of the flare up (Litton, 2003).

Teaching a client that fatigue experienced may be controlled by simply balancing activity with adequate periods of rest, can save a client a lot of distress (Hendry, 2002). Education directed at listening to one's body, accepting one's limitations, and getting adequate sleep (which may mean more than eight hours for an individual with lupus) will be beneficial.

Developing an exercise program for a client with lupus may help to reduce joint pain, loss of range of motion, and stiffness (Hendry, 2002). Improving sleep, strengthening muscles, and decreasing the fatigue experienced may also result from the exercise regimen. Exercise can function as a stress relief which in itself is beneficial, as stressful periods may potentially lead to flare ups or decreased coping ability in those with lupus. Unpredictable exacerbation of symptoms alone presents a challenge for those living with lupus (Litton, 2003). Not knowing when a flare up will occur can affect all life areas. Exercise will help to control the experience of anxiety and the unpredictability of what each day will bring. Collaborating with the client in designing his/her exercise program as well as tailoring the program to suit the client will only encourage the client to adopt a lifestyle where exercises are routinely done.

Education regarding a proper diet high in fruit and vegetables, and possibly referral to a nutritionist for further advice would also be indicated for clients (Minami et al, 2003). Helping the client understand what lupus actually is and how it affects the body would help a client to make proper decisions regarding their health. For instance, sun light should be avoided by those with lupus as it can lead to flare ups (Alamanos et al, 2003). In addition, education regarding the side effects of medications, new research being done, or where to get further information on lupus will also likely be appreciated by such clients.

In support of my opinion is a study that was done by Kyeong Yae Sohng in 2003. In this study, one group of lupus clients received a self help program while one group of lupus clients did not. It was found that the self help group had a better self view, improved coping skills, decreased fatigue, and decreased depression when compared to the control group. The self help group was discovered to be living at a higher life quality than the control group.

On more of a personal note, my mother has fibromyalgia and my father has rheumatoid arthritis, and so I found it interesting when I read that lupus is often misdiagnosed as one of these diseases. I do have a good understanding of what a chronic disease entails. In addition, I understand that pain management education and self help programs can make a world of difference because I've seen the effect in my family. My parents have attended education sessions on their diseases, read recommended books, and have attended specific functions related to self management of a chronic illness. Giving clients the power to make educated decisions on how they want to live their life is the most imperative gift one can give. Allowing clients to feel that they have the ability to take control of their life, and not be a passenger of an out-of-control chronic disease is something that those who have the knowledge to offer should embrace.

There are a number of traits or mannerisms that a physical therapist might possess, in addition to utilizing active care, which may positively impact on the life of an individual with lupus. Firstly, a physical therapist that is able to listen to his/her clients while expressing sincerity and empathy will positively impact on the patient-client relationship. From my own experience it is imperative for the client to feel that they are being heard.

I recently completed my first five week clinical placement as a requirement to complete my first year in the School of Physical Therapy. I learned a variety of valuable lessons throughout the five week placement. One of the lessons I learned was realized upon saying goodbye to clients with whom I had interacted throughout the placement. Some clients were quite emotional when saying goodbye to me which both touched and surprised me. I realized that to have an impact on a client you do not need to have all the answers, rather you need to develop a rapport and exchange with the client in such a way that the client knows what he/she is communicating is being heard and understood.

I feel it is necessary to see each client as a unique and whole individual to positively impact on the client. No one wants to be labeled by one distinguishing factor, and thus a client with lupus does not want to be seen solely as a lupus client. Addressing the client's psychosocial issues, support network, family situation, ambitions, fears, and concerns will be especially important.

In conclusion, a chronic disease has the potential to disrupt every aspect of a client's life. I feel that emphasis on an “active” physical therapy approach through the notion of empowerment will offer opportunities for those with lupus to prevent the degradation that can occur in these life aspects.

References

Alamanos, Y. et al (2003). Journal of Rheumatology. Epidemiology of systemic lupus erythematosus in northwest Greece, 30, p731-735.

Hendry, F.A. (2002). Nursing Standard. Autoimmune disorders, 16, p38-40.

Litton, K. (2003). RN. Defenses gone awry, 66, p53-60.

Minami, Y., Sasaki, T., Arai, Y., Jurisu, Y. & Hisamichi, S. (2003). Journal of Rheumatology. Diet and systemic lupus erythematosus: A 4 year prospective study of japanese patients, 30, p747-754.

Sohng, K.Y. (2003). Journal of Advanced Nursing. Effects of a self-management course for patients with systemic lupus erythematosus, 42, p479-486.