Stigma is not the solution: Let’s help arthritis patients overcome their pain
1 October 2014 11:31 am
By Shabnam Farook
Living with rheumatoid arthritis can make day to day life challenging. Sometimes the hurt that engulfs you when you realize that you are a victim to a disease that is incapacitating is worse than the agony of the pain you have to endure. With most sufferers of arthritis being women, they are often faced with the additional burden of social isolation, withdrawal, depression and neglect because of the stigma surrounding the disease.
Dr. Lalith S. Wijayaratne, Consultant Rheumatologist from the department of Rheumatology and rehabilitation at the National Hospital, has countless amounts of patients walking in and out of his consultation room, throughout the years, and most of them are women he says who sadly have to suffer with not only the physical pain of having arthritis but a whole host of debilitating psychological conditions that further worsen the state they are in. Understanding that there was very little medication could do to ease the mental agony that they were facing, with the support of colleagues and like minded individuals he initiated a patient centred organization that provided holistic support to the patients and their caregivers. Dr. Lalith S. Wijayaratne enlightened LW about rheumatoid arthritis, preventive measures that could be taken to avoid the disease, the Association of Persons with Rheumatic Diseases, an organization that he helped initiate and efforts taken to create awareness about arthritis in view of World Arthritis Day, which falls on the 12th of October.
Q: Dr. Lalith can you define what rheumatoid arthritis is?
“I think first and foremost we need to understand what arthritis is. Arthritis is a disease that occurs in the joints. A joint has a lot of delicate structures within it; some that lubricate your joint and some that provide shock absorption. In arthritis what happens is that these delicate structures undergo inflammation. They get swollen, they become red you undergo pain. And inflammation is a term we use when the tissues become sore. And when you hear the words soreness, there is pain. So the common symptom of arthritis is joint pains. But at the same time I must tell you, that everyone who has joint pains doesn’t have arthritis. A joint has ligaments which links two bones together. And when these bones move there is a small chance for these bones to be dislocated or dislodged. There are times when we sprain these ligaments when we have loaded the joint too much by engaging in too much exercise. Everyone who has a joint pain does not have arthritis. Some of them do have arthritis, so as a doctor when the patient comes to my clinic room by talking to them and examining them I know what exactly it is causing the pain. I examine them and find out whether it is arthritis or if it’s a sprain.”
Q: Is there a particular age category that triggers the onset of rheumatoid arthritis?
“Anyone can get arthritis, even if you are as young as six months or you are 90 years old. The peak age group is between 20 and 45 years. Sadly, this age group is the most productive and therefore, arthritis indirectly impacts the country and its productivity. When you look at the bigger picture, it’s not just about arthritis; it’s about how it impacts the individual’s personal and professional life and the country at large. To make the situation worse, among those who suffer from arthritis, two thirds or more of them are women. In most cases, when you consider Sri Lanka the woman is the centre and the livewire. So if something affects her the whole family system collapses.”
Q: What are the causes of rheumatoid arthritis?
“The disease occurs from within so you can’t blame the arthritis patient for anything. Sometimes the immune system in our body doesn’t function the way it is supposed to. Instead of protecting your body sometimes it destroys it and we don’t know the reason for this. When you contract a disease because of this condition it is called an auto-immune disease. Auto-immune disease is where your own immune system while attacking the invasive molecules also starts attacking your own body structures and your body structures start getting damaged. Arthritis is one such example of an auto immune disease.”
Q: So you cannot actually blame arthritis patient can you?
“Not at all, it can happen all of a sudden. You may get it next month, or even next year or may never get arthritis. So it’s very unpredictable.”
Q: Is there anything one can do to mitigate or reduce the chances of getting rheumatoid arthritis?
“A family history of arthritis and your lifestyle can increase the risk of getting arthritis. Recent research has found that excessive weight gain can increase the chances of getting arthritis. When you consider the food that you eat, studies have shown that red meat is supposedly bad; this includes meats like beef, mutton and pork and lamb. Research has also found that there is a less percentage of arthritis among vegetarians. New research has also shown that when the fat cells in your body go beyond a certain point they produce a lot of chemicals which make you susceptible to auto-immune diseases. So the fat tissue, not only adds load on your joints, it has a negative effect on your immune system, giving rise to diseases such as arthritis. So to avoid this, always make sure that your body weight is kept under control. And, one important aspect that I want to educate people on is that even though you get arthritis when you are 20 years old, the risk factors develop when you are about eight or ten years of age. Chemicals used in food preservatives, colouring and flavouring have a negative impact on your immune system so you need to be mindful about consuming too much of these as a part of your regular diet. Exercising is a must. Research has shown not doing regular exercises make your joints lazy and dramatic changes occur in your joint, making you vulnerable to getting arthritis.”
Q: Does over exercising also make you susceptible to rheumatoid arthritis?
“Yes, even that could be bad too. Everything in moderation is good for you. For the prevention of arthritis, careful consideration of your body weight, your food intake and exercise is important. You have to even control habits such as smoking, alcohol, drugs. In an urban setting most women consume alcohol; this also needs to be addressed. If you maintain a healthy lifestyle at a nearly stage of your life then you won’t be susceptible to diseases like arthritis.”
Q: At what point should you consult a doctor?
“You should consult a doctor if you develop a joint pain and you can’t find a reason for it. If the small joint of your hand, heel, toes or feet become painful, that is due to arthritis, unless it is due to injury. And the second point that I’d like to mention is that just because you get a pain you don’t have to run to the doctor. For the first 10 to 12 days you can use home remedies like taking pain killers or applying a gel. If none of the remedies work then you have to consult a doctor. If you have pain in any of the joints in your legs, and if you cannot bear your weight, these are good indications that you need to see a doctor. If you wake up one morning and cannot lift yourself off your bed, then this is another indication that you have to immediately consult a doctor.”
Q: You mentioned that more women are affected by rheumatoid arthritis and that several indirect factors that affect the condition. Could you elaborate more on this?
“When we talk about prevention, several factors come into play like your lifestyle and your genes, which may impact you indirectly. In the case of arthritis your genes and the environment plays an important part. So when you get arthritis or any other kind of auto immune disease your mind or your psyche plays a big role. Recent developments in the field of science show that your mind has a big role to play with your body. So when you get arthritis, there is a possibility of being depressed. And if you are anxious and worried the condition could worsen. So there is an important role that the family members, neighbours, friends have to play in the lives of arthritis patients.” Firstly, you have to understand getting arthritis is not the fault of the patient. It is an inbuilt thing. Secondly, you must understand when a person gets arthritis, you have to lend a helping hand to that person to overcome the crisis, because one of the side effects of getting an autoimmune disease like arthritis, you become withdrawn. So the disease itself can cause changes to your mind and body. Therefore, we must support arthritis patients by being encouraging and motivate them to overcome their problems. As a doctor, I can only diagnose the disease, prescribe tablets and advice the patients. I can only perform a small role in the whole process of recovery therefore; everyone in the family should join hands to help. Today arthritis care is team work. If you have a friend or a family member who suffers from arthritis you have to encourage them and help them overcome the state of withdrawal they are in.”
Q: Could you enlighten our readers about the Association of Persons with Rheumatic Diseases and how it came into being?
“As people who interact with arthritis patients regularly we saw a deficiency in the process. We realized that many arthritis sufferers had several unmet needs. Patients wanted more information about the disease; they wanted to meet others who suffer from the same condition and share the same experiences. As a doctor there were certain limitations to the advice I can offer, and it didn’t have the same impact as it would have when there was an exchange of thoughts and ideas among patients themselves. So we found that there was a lack of an organized patient group that could share success stories with each other, provide motivation, address issues faced by family members, and help them cope up with the situation. I also wanted someone to educate the community about arthritis and I felt that a patient taking the message across to the community and others suffering with the condition, made a bigger impact rather than a doctor. In most of the international conferences that I have attended over the past 20 years, there was an increased presence of patients and I saw how the lives of arthritis patients had improved drastically over the years. When I was thinking of starting some kind of program the Swedish Rheumatological Association came forward to help us by offering to provide the technical know how and funds to get our intended project off the ground.” “The main intention of this patient movement is to empower them because today the whole world is a right based world, where the right to get the correct treatment and access to drugs is important. In the developed world it has been found that patient groups have an influence on political will. So this organisation is geared to empower the patients to ask for their rights and give them an opportunity to share their success stories with other patients. It also provides the opportunity to counsel patients, educate the community and advice on prevention on real experiences.”
Q: Doctor what have you planned in view of World Arthritis Day which falls in October?
“We want to use the day to create awareness on what arthritis is all about, the importance of visiting a doctor early, educating the family, etc, and if you are an arthritis patient what you should do. The key message from the western medical field is, ‘come early.’ I am sad to say that most people in Sri Lanka come in for consultation late, and then there is nothing that can be done. That is a very important message we want to give the public. There is also a lot of stigma surrounding arthritis. A lot of people are scared of taking arthritis drugs because they think that it would cause other side effects. As doctors we always weigh the risk factors before prescribing a drug. And another important message that I’d like to give the public out there is not to rely on general information taken off the internet and information passed down by those who are uninformed. If you have a question about arthritis, ask a doctor, we are happy to clarify any questions you have.”
Dulika Weerasinghe, a rheumatoid arthritis patient and the President of the Association of Persons with Rheumatic Diseases shares her thoughts with LW…
“I’m an IT engineer by profession and I’m employed as a Manager at a Software Developing company. I’m married and I have one daughter. 11 years old, unexpectedly, I became a rheumatoid arthritis patient, just one year after my marriage. Like everyone else I too wanted to live a happy fulfilling life and even though there were lots of hardships being a rheumatoid arthritis patient, I never let my illness conquer my willpower. The last few years were the most fortunate, important and beautiful years of my life. Within these few years I achieved a lot because of my determination and courage to succeed. I left behind my pain, aches and illnesses and went to work and worked with my colleagues and sometimes I worked harder than them. As a mother I have countless responsibilities, especially towards my husband and my daughter and even society. There are few things that have ensured my success like my will power, mental strength and abiding to my doctors’ instructions, by continuing western medical treatments. As a rheumatoid arthritis patient I have to continue my medication because this disease cannot be permanently cured. I always try to maintain my balance which is very important when you are a patient. All my friends, family members and staff are aware about this disease, and they help me a lot. The knowledge I have gained through my doctors and being part of the association has helped me a lot to overcome my burdens.” “In 2010, the Swedish Rheumatism Association and My Right wanted to form an association that emulated the success of the programs that were launched in Sweden which strengthen the condition of rheumatoid arthritis patients by helping them manage their disease and providing them the knowledge and skills to work towards gaining their rightful place in society. They then selected the Disability Organizations Joint Front as a suitable lead organization while the Sri Lanka Association for Rheumatology and Medical Rehabilitation was chosen to provide the necessary technical support. This saw the establishment of the Association of Persons with Rheumatic Diseases which is aimed at creating awareness, improving the wellbeing of rheumatoid arthritis patients and giving them the opportunity to gain equal rights in society. This organization’s vision is to see persons with rheumatic diseases enjoy equal rights and become independent individuals in the society. We currently have 10 branches in districts such as Trincomalee, Moneragala, Anuradhapura, Nuwaraeliya, Kandy, Ratnapura, Galle, Kurunegala, Jaffna and Colombo. Each district has its own executive committee that has 11 members and a district committee which consists of 9 patients, one medical officer of health, a public health worker and one social service officer. These committees conduct health camps, provide medicine, create awareness programs among patients, and educate and encourage the control of the disease among other activities. If you’re a patient of rheumatoid arthritis or have a family member who suffers from the disease you can join our organization and take part in the numerous activities that we conduct and benefit from the knowledge provided. Our association is quite young as it was formed very recently. As of now we work closely with medical professionals, the government and other organizations to create awareness about rheumatoid arthritis. It would be great if we could have continuous funding that support our efforts to create awareness about rheumatoid arthritis across the country. I have gathered considerable knowledge and continuous updates through these programs. I had the opportunity of associating with Specialist Doctors, and Specialists in Physiotherapy and occupational therapy through this association. The advice and consultations I received immensely helped my wellbeing. I have got a valued opportunity to share my knowledge and experience among other fellow patients through this association. I must sincerely thank the Swedish Rheumatism Association, MyRight Sri Lanka, DOJF and Sri Lanka Associations of Rheumatology and Medical Rehabilitation for providing all the necessities, guidance and advices to uplift arthritis patient’s lives in Sri Lanka.” “I have to say that most people in the society don’t know what rheumatoid arthritis is, and even the people who suffer from the condition don’t know what they have or how they should get treatment. If you live in Colombo you’re lucky, because you have the opportunity of meeting doctors and getting treatment, but people in rural areas face numerous problems. Our association is determined to rectify this situation to our best ability. When talking about how one can support a family member who has rheumatoid arthritis, it is important to help the patient by strengthening their mental status, this way, they have courage and capacity to overcome any situation that they encounter.”
The Association of Persons with Rheumatic Diseases is organizing an event to mark World Arthritis Day on the 12th of October from 9am onwards at the Lakshman Kadirgamar Institute for International Relations and Strategic Studies with an array of activities that will help increase awareness about rheumatoid arthritis.
For more information about the organization you can contact the secretary on 0779833006 or the treasurer on 0724629400. Your generous contributions can be sent to The Association of Persons with Rheumatic Diseases, No 31/A, 1st lane, Uddyana Road, Ratmalana, A/C No- 0135 6000 0043 – Sampath Bank, Nugegoda
Renuka Shares her thoughts of being the mum of a juvenile rheumatoid arthritis patient
Q: Renuka, your son suffers from arthritis since he was kid, could you tell us about his condition?
“Since my son was 5 months old (from the day he took his triple injection) he contracted a high fever and joint swellings. This fever continued for two years. In Sri Lanka, at that time they could not diagnose the condition. We had to go to numerous doctors and he was put on a steroid. When he was one year old we took him to Singapore and they diagnosed him as suffering from Juvenile Rheumatoid Arthritis. Unfortunately by this time he was on a steroid and to this day he has to depend on it and anti inflammatory medicine.” “In our case we met Dr. Stella De Silva when he was three years old. From there onwards we had a doctor who was like his mother. She treated him till he was 13 years and then she consulted Dr. Lalith Wijayaratne who has been his doctor since. Here too, we were very lucky to have Dr. Lalith as his doctor. We are considered family. 20 years have gone by; He is now 34 years old. He now goes to work and manages his condition with the drugs.”
Q:How does he coped with his condition?
“He suffered a lot. When contracting the disease as a baby he was always in pain. It could be any joint, at any time. Sometimes it was the chest bones too. We used to think he was getting a heart attack. Years went by, and we learned to cope. He went to St.Thomas’ Mt Lavinia and his friends helped him cope and so did the teachers and the warden. The teachers were understanding and were very caring. He enjoyed his school life because of this. He studied up to his O/ Levels, followed a course in computer studies and then pursued a career in IT. He is lucky that even at his work place he has a very understanding boss who extends his fullest support.”
Q: How have you coped with his condition as a mum?
“It is very hard. At the beginning, not knowing what it was, having a child who was crying all the time and with fever and rushing in and out of hospitals. I have a very understanding husband. He was always there to support. So did my family, my mother, my brothers and sister. You need this support otherwise it is very hard. So as you see, we had the fortune of having family, friends and doctors who were caring and who stood by us. Luckily for our child, we had and continue to have a great support system that help us cope, but most people don’t have that kind of support and that adds to the already stressful situation. Therefore, it is welcoming that the Association of Persons with Rheumatic Diseases is creating awareness about the disease and organizing activities that support both the patients and their caregivers.”
Q: What are the day to day issues that both he and you face? What kind of strategies have you used to overcome these issues?
“He suffers from pain and joint swellings. He takes his pain medicine and bandages his joints. Now he takes the minimum amount of medicine and only if the pain becomes worse he takes an increased dosage. When you take this type of strong medicine you have to take care of your stomach and make sure that you do not get gastritis. Physiotherapy is also important to keep the joints mobilized. Eat the correct food and drink a lot of water. Try to avoid red meat and food that is very acidic. Keep away from artificial food. Every patient undergoes a different experience. For my son it was through trial and error we have found out which food is better. For me, everything changed when God found me as I’m a Christian. I learned to cope with having a son who suffered from this dreadful disease and how to let go. I learned to live my life, and allow him to live his. Not suffocate him through my fears. I learnt to be a positive thinker. Though he still suffers from this, he is also 80% pain free. His days are better. We still have our ups and downs but we have learnt not to let it control our lives.”
Q: What can society do to help?
“Be very supportive of persons and provide easy access to places.”