This is a modified paper work of mine from past years that i wanted to share. it is not as the original one. i have taken parts that are not relevant for public.
Living with rheumatoid arthritis; patient prospective
I was assigned for a child of 13 years old who suffer from Dawn syndrome originally. However due to medical problems all my exams have been postponed by a great help of the medical school. I was interested in the little boy’s case. For some reason, my case was changed in the summer. Now, I’m assigned to Doctor O who was of great help to me and my case was changed to an elderly Irish man suffering from rheumatoid arthritis. [i] I still was interested about this case as we had a glance look in CP module in the first year about this disease which one of my relatives suffers from, too.
I was nervous and interested at the same time. I was nervous because this is the first time that I experience such thing and I have to behave in professional manner as if I was a real doctor. I was interested because I wanted to know how this would be like. Will I manage it? It was like a challenge for me. It was new experience for me. At the beginning I thought I would get maximum benefit if I cover the subject medically by reading from textbook but I would say that if any one wants to get the maximum benefit of the family attachment scheme should be capable of listening to what the patient says and feels what the patient suffer from or things that can not be expressed verbally but it could be seen the face expressions and the changes of the voice. You should think as human being because this patient is just like you body and soul. You do not have to focus on the physical problems only. A lot of people who looks good but they are sick internally. All what you have to do is to sit with the patient and simply talk over a cup of tea or coffee.
Rheumatoid arthritis (RA) defined as “Rheumatoid arthritis is a chronic disease causing inflammation and deformity of the joints. Other systemic problems throughout the body may also develop,
including inflammation of blood vessels (vasculitis), the development of bumps (rheumatoid nodules) in various parts of the body, lung disease, blood disorders, and weakening of the bones (osteoporosis).”. “There is no cure available for RA. However, treatment is available to combat the inflammation in order to prevent destruction of the joints and other complications of the disease. Efforts are also made to provide relief from the symptoms and to maintain maximum flexibility and mobility of the joints.”[ii]
“The incidence of RA is in the region of 3 cases per 10,000 populations per annum. Onset is uncommon under the age of 15 and from then on the incidence rises with age until the age of 80. The prevalence rate is 1%, with women affected three to five times as often as men. It is 4 times more common in smokers than non-smokers. Some Native American groups have higher prevalence rates (5-6%) and people from the Caribbean region have lower prevalence rates. First-degree relative’s prevalence rate is 2-3% and disease genetic concordance in monozygotic twins is approximately 15-20%”[iii]
The 9th of May , it was a historical day for my. I prepared my self and took a taxi to the patient’s house to avoid being late as I am not expert in the area where he lives. While I was in taxi, the tension and the nervousness were growing bigger and bigger. It was the first time that I would talk to a real patient in his house. I brought with me little box of sweet as a gift for the family. I arrived on time and we started the session after warm welcoming from the lovely couple that removed all my tension. First, I introduced myself, showed the patient my student identification card, and explained to him the objectives of these visits.
WO is a 75-year old Irish man who suffers from rheumatoid arthritis (RA). He lives in small house in X city not so far from the city centre. He is married since he was about 26 and lives with his wife in that 2-floor house lonely. He is a father of one daughter of 40 years old. His daughter is a Doctor who teaches mathematics in a university in the Capital XX. His daughter is married there in XX and rarely come to X city. WO has 3 sisters and 3 brothers and only keeps contact with them through phone as they live far away from his place.
His story with illness traces back about 20 years ago when he was 56 years old. At that time, he was working as butcher in the city center. He used to cycling to go to his work and then back home. One day, while he was cycling back to home, he experienced knee stiffness that annoyed him so much. He went to the hospital. There were no wounds or any sings of trauma. It was clearly “neat” as he described it. He was sent to home and advised to have rest for around three days. He slept that night quite comfortable but then next morning he had hand, shoulders and wrist stiffness. This feeling of being sick was very hard for him as he never experience illness through his life and never been admitted to hospital before or visited General Practitioner. He even said that it was the first time he knew that just 5 minutes away from his house there was GP clinic. After this multiple regional stiffness, he went to this GP clinic but this time with bigger worries. His GP decided to send him to a specialist, rheumatologist. He took so many blood test and other tests which he can not remember as they were done 20 years ago. He took blood tests, C-reactive protein and X-rays and eventually was diagnosed with rheumatoid arthritis. It was very shocking news for him. He said it was very sudden sickness as for 56 years of life without illness now in one day he has to live with chronic illness for his entire life. It was hard for him even to believe in what the doctors said. He was arguing why now? He was very angry. His GP sat with him and they discuss his condition. The GP tried his best to clarify any misconceptions or misunderstanding of his disease “rheumatoid arthritis” and he was finally convinced that he should now focus on the treatment rather than sticking with the blame game! He knew that the journey of adapting this new condition will now not be an easy job. He realized that there is a tough time waiting for him and he should be very capable in handling this to make his marriage and life works. He had to focus and he needed support. This experience of grief reaction, Grief reaction is normal and natural consequence of personal or collective loss, didn’t last long. In his case, he had to loss his job as a butcher and he was afraid about losing his entire life not clinically but socially. This experience of grief reaction was diminished gradually due the great support by his wonderful wife, Mrs. WO. His wife played very important role at this stage. She encouraged him that he can make it and there life is going to be happier than before. She was with him during all the time and companied him in every step he made. She was with him in the ward, labs and home. “The medical staffs were very helpful”, he said. They were supportive and worked hard to make him very satisfied and comfortable.
Now after realizing that he had to move on, the journey of treatment has just begin as he said. It was tough period especially for the first month. It was 20 years ago so Mr. WO can not remember the names of the drugs he used to have at the beginning, however, what he can not forget is that none of them worked. Not only they didn’t work but also made his condition worse. Aspirin led to an internal abdominal bleeding and he was admitted for an entire one month to the hospital. At that time drugs were not as available as it is now in terms of diversity according to him. The major challenge in this month for his Doctors is that to stop his abdominal bleeding and finds alternative drugs that would work for him. Fortunately, his abdominal bleeding was stopped and he had alternative medications.
In the second visit, I was very excited and I could not wait for next appointment with him. Due to the enjoyment of talking about his story with chronic illness, he suggested that he would be happy to have 2-hours period rather than regular one hour one. The fear of meeting real patient having chronic illness has been decreasing since the first visit. I gain a huge amount of confident in myself. I realized that it is hard to keep your feelings away when talking to a person who is entire life had changed since he was diagnosed with RA 20 years ago. I learnt that every one of us could have a disease or a major problem in his life at any time but the “real problem” is how you manage it and overcome it because life is going to continue anyway. I come to an agreement that people need somebody who listens to their feelings and problems. This little task “the listening” could help the patient very much. Sometimes people do not really want a good solution for their problems. They just want to talk!
After I have given him little chocolate box that he mentioned that he always sneak in to the kitchen to eat some of his favorite heart-shaped chocolate while his lovely wife Mrs. WO is busy doing some house works , I asked him how he feels about this wonderful sunny day. He was happy about the two: the sunny day, and heart-shaped tasty chocolate he loves. I decided this time to have quick review about what we have done in the last visit and he agreed. This was very good for me to fill in some of the gaps of the story and this time I asked his wife to join us. She was sitting with us in their beautiful living room for the entire session and we enjoyed talking. I heard the story from her second time which was important for a better understanding of the effect of the disease in the couple’s life. Because of the good memory his wife has, some of the missing parts of his story especially in the early stages were clarified.
This time, I wanted to focus on the impact of the chronic illness on both the patient himself and the patient’s family. RA had great impact on the patient life and still having great impact on the patient life and his family life, too. This effect of his chronic illness is enormous and huge. His job as butcher was like a hobby he loved it so much. He had to give it up and quit, however after 3 years of staying home. He was getting better and decided to go back to the work as a butcher where his old friends, 7 of other butchers in the same shop, gather and work together as network of strong men as he preferred to describe. They were a bunch of “macho men”. Being a butcher, he has to get into the large refrigerator where the meat is stored. His GP and his wife tried to convince him to stay home but he refused. Eventually, his GP remained him not to get into the refrigerator as cold triggers stiffness and pain. He said that he was fine at the beginning and happy at work. He stayed away from the refrigerator as one the seven butchers took his turn in collecting meats from the refrigerator every time his turn comes. ‘I committed the most stupid thing in my life when I broke the rule and I got into the refrigerator and refused to the help offered by the other butchers anymore’ he said with sorrow. With continues exposure to cold, his hands were deformed and he said that his condition returned back to Zero. He noticed changes in the shape of his fingers. He began having problem in cutting the meats especially those that are very strong and needs a firm grasp of the chopper. He said I realized now it is the time to stop butchery and open new page of life without my favorite hobby and be content of his situation. He refers to this decision as the smartest thing ever done in opposite the first one and he is happy to quit the job before it is too late.
His lifestyle has been dramatically changed. He is now living with his wife as a couple and nobody lives with them. They used to go and watch sports but now they can not enjoy watching sports live in the field due to Mr. WO illness. A lot of activities he quitted such as going to the Opera. The most annoying thing he experiences usually is the sudden, painful stiffness that ruins his plans always. His wife does not drive so in case of this “stiffness attack” comes while they are away in picnic for example they have big problems returning back home as he is the only one who drives. There is nothing to discuss in great details for the impact of his disease in his family as the problems Mr. WO has can be applied to his wife because they were not a couple only but a single unite consists of 2 elements that moves like a single mass through the life. They were planning to spends holidays out of cork so I found it is good chance to find out of the illness had impacts on their vacations. Unfortunately, they can not enjoy vacations as normal people do because of the same stiffness attack that might come anytime they do not travel for adventures goals such as safari. They are like hotel travelers. They just change the atmosphere in a big hotel and stay in that hotel. Sometimes they walk around the area of the hotels but not very far. The best vacation they could have is then a big luxury resort that has everything from A to Z in it and then there is no need to get out of it. They told me a story that one of their relatives got married and the marriage party is going be held soon so they were invited as they so close to them. The problem is that they live far away and they should travel. They picked a hotel near where the party is going to be. They arrived at night and the party is going to be tomorrow back then. Early in the morning he had stiffness and his wife said that it took him 15 minutes to walk from the bed to the bathroom. He insisted to go even thought he has this painful stiffness but his wife said “No, you don’t have to kill yourself over a party”. He said “but we have come along all this distance to celebrate with our relative, I can not believe that the party is 5 minutes walking from the hotel and I can not join them”. Their relatives kept calling over and over and they were mad at them. Mr. WO went to bathroom and took warm shower to relieve the stiffness and put Dileme over the stiffed region in huge amount hoping that it would work faster and he could join the party. After 3 hours his stiffness gone and went to the party but was very late. Their social life is greatly impacted. I asked him about how many friends he has now? ‘You can count them in one hand’ he answered. He is having a big problem socializing with people. He said that it is hard to make friends and socialized with people if you do not drink alcohol and spends time in the bars and pubs. Therefore, if you add to that –talking to me- rheumatoid arthritis then the mission is impossible. I shared with him the same problem as I do not drink alcohol and I have the same problem in socializing. He was amazed why you do not drink especially you are in collage and it is like a tradition nowadays for collage boys to drink? He asked me. I told him that my religion –Islam- highly forbid drinking alcohol. He was happy to hear that I do not drink as he considered himself as alcohol fighter. His wife, too, do not drink and they both are members of an organization for people who are against alcohol consumption. Every time Mr. and Mrs. WO make new friends they are lost so fast. He said people can not believe or understand that I am deferent and we can not go out anytime anywhere. Because of my illness, place and time is so important and unfortunately both are limited. He said that every time they are invited over dinner or for dinning out with those friends and they can not do that they simply refuse and tell them the reason why? ‘But none believed me’ he said. They thought that we do not like them anymore. People can not understand! And it is hard to explain if they just do not feel it or get it. Now they have 4 or five friends. They are very understanding and they gather only in home but if it has to be in one of their friend’s home then they pick them up and drive them back home, too. The neighborhood is very quite and the neighbors are very helpful. One day they helped him in cutting the trees of his garden.
His illness have not led to huge new adaption to their house except that new bars were made starting from the gate to the entrance door as he used it to assist him in walking when he is sick or stiffed. An electronic shower was added to the bathroom in ground floor as hot/warm water help him to relief the pain and stiffness. They are planning to get new one, too, for the bathroom in the second floor that he could he used when he is having bad time with stiffness attack while he is resting in his bedroom. He has a sports machine such is walking machine and bicycle to exercise in the 2nd floor as it is very helpful to exercise for relieving pain and preventing stiffness.
They don’t have any financial problems at all now. However the first 4 years were little bit hard as they had to pay for the drugs/medication from the pharmacy. They got the medical card when he reached 60 so now he does not pay for the drugs. I noticed that they way medical card works are that the patient buys the drugs by his/her money then they post the bill to the responsible agency then they receive the money back after a while. I was wondering what if the patient does not have cash at the moment. I asked him this question which popped up in my mind. His wife answered then the chemist would give him the drugs only for one time. This was defect in the system, from my point of view. What if he/she doesn’t have cash for the second time and why he should wait for the money to be sent after a period of time? The patient might need this money while it is given to the chemist and would return after longer time via the post!? His wife does not work as the rules in Ireland at the time of their marriage is that women are not allowed to work when they get married so there is no extra source for money except Mr. WO’s pension. There is a voluntary organization which helped him and still helping him financially. It is called VHI healthcare. They have to register annually of a fee of 1,300 euro and they would receive free treatment at public and private hospitals. Both the couple is included in this membership. He has nurse in call that would visit him at home to check on him especially for physiotherapy. He now receives treatment in private hospital as he said that it is better from waiting for long list. He also happy that in private hospital he always deals with the same doctor every time that’s why trust grow with time and he said that it feels like a direct connection and relationship that now he considered his doctor as his friend, too. This is deferent in public hospitals where every time there is a new doctor. Some of them are good and others are bad in term of communication and services. He said that one time one of the doctors prescribes him a medication without even looking at him as his head was at the desk all the time!
His satisfied with the health and social services but he has some notices about them. He said that public hospitals are roomed and there is a long waiting list and that it is not good if I want to sake help urgently. He is comfortable with the communication with medical staff and they were of great support every time he needed support. He has nurse-in-call for physiotherapy but he and his wife are not very satisfied about how things work. They said that there is a very poor follow-up by the nurse and she only comes when there is a problem. From the couple’s point of view, the nurse and medical staff in general should have a regular check-up or follow-up to prevent any possible crises as most of them could be prevented if noticed so early. I asked them about any support group that they could join but they said there is none of them available. They suggest that government or any one interested in the heath system should provide those support groups as they could make friends out of those and also could share tips and advices from other patient with the same disease. Their GP, Doctor O, is very great and they love him as he very clever and supportive. However, recently his partner died and it is now a longer queue to book an appointment because he is now treating both his patient and his partner’s patient who died recently.
I realized that patients need more than chemicals, and medications. They also want love, support, care, and to feel secure. It is the society responsibilities to clarify misconceptions about several illnesses such as rheumatoid arthritis, HIV/AIDs. Those patients are not guilty. They are humans that needed to be treated with full respect. After finishing the visits, I reviewed my objectives as medical doctor and I concluded that we are dealing with a human being who has a disease and not dealing with the disease and forgetting about what the patient feels! It could be this misunderstanding of this fact that led to the expression “We cured the disease, but the patient died”.
In term of personal impact, I was astonished by the fact that his illness led to more love and gathering of the lovely couple as they have now more time spending with each other. I begin to think about marriage and its importance in a way that I never looked at. It is good to have somebody who is always out there for you. Their story of dedication and love are eternal for me. I will never forget how his wife sacrificed to make her man happy and healthy. I begin to understand the Irish family traditions and how they used to live in the past. I was amazed that women in past were not allowed to work when they got married. Now, women have more rights which are very good for the whole society.
[i] All the names in the essay are fictional or initials.
[ii] Rheumatoid Arthritis. Alternative Medicine Encyclopedia. Available from: URL: http://www.answers.com/topic/rheumatoid-arthritis?cat=health
[iii] Rheumatoid Arthritis. Wikimedia Foundation, Inc. last modified on 27 June 2008, at 13:59. Available from: URL:www.wikipedia.org