Learning that you have arthritis — or any chronic disease, for that matter — can be a terribly isolating experience. For some people, it's almost like waking up in a foreign land. Suddenly there are a host of strangers in your life (doctors, nurses, therapists, counselors); you may have to learn to adopt or adapt to new customs (adapting routines and habits, pain relief, exercise routines, medication regimes) , and acquire a new vocabulary full of difficult words and terms (NSAIDs, risk-to-benefit ratios, sedimentation rates, range-of-motion tests). It's the kind of news that can make you feel alone — frighteningly alone.
Well, you're not alone. You need to see yourself not as a stranger on the outside, but rather as part of the team of people involved in your treatment and care. That team includes your family and friends, your family doctor, and probably a rheumatologist. Your team could also include a physiotherapist, an occupational therapist, nurses, pharmacists and a wide range of other people who bring their unique skills, experience and concerns to the long fight against arthritis.
You & Your Treatment Team
The key player in your team is you. You have what may be the most demanding role in your care. You have to learn everything you can about your disease — what it is, how it can affect you, what part medications play in your treatment, what the other components of your care are going to be, and so on. In some ways, you may even have to learn to be yourself all over again. You may have to make adjustments in the way you do nearly everything in your life, compensating for weak and fragile joints, coping with pain and fatigue, learning about side effects from medication, making room in your schedule for rest and exercise and special strategies designed to maximize your physical abilities, learning and practising techniques that will reduce your stress and help you deal with the inevitable emotional fallout a chronic illness entails.
Learning to make arthritis part of your life isn't easy. But learning as much as you can about your particular type of arthritis and actively working with your arthritis treatment team are two very effective ways of regaining control over your life. Take advantage of the help, advice, expertise and experience of the members of your treatment team: Ask questions, and learn to use every resource available to you. And remember: You're not alone.
In a way, your team even includes the more than four million other Canadians with arthritis. Each of them is unique, yet each endures an experience that's similar, to one degree or another, to your own. That may seem small comfort — after all, none of them can diminish your pain, reduce your disability, take away the source of your discomfort — but all of those people have contributed enormously, through their treatment and care, to the rapidly increasing understanding of the disease. They also represent a deep pool of personal experience and a tremendous source of empathy and understanding for anyone who's struggling to come to grips with their arthritis.
You can tap directly into that resource by joining a support group (many of which are organized and supported by The Arthritis Society) or logging onto our online discussion board. Support groups and discusson boards bring together people who have at least one thing in common: They know what you're going through, because they've been there. They know first-hand what it's like to feel alone with a chronic illness, and many of them have learned how to deal with it, have learned how to reclaim their lives from arthritis. Their experience and advice can help you learn to live with arthritis, too.
You also have your friends and family, most of whom are only too willing to help, if only you ask for it. Most times, that's all you have to do, if you've done your best to make it clear just what you're going through. Admittedly, that can be tough — first of all, learning to understand your disease, then finding ways to communicate an experience that others don't comprehend. If you've been independent all your life, asking for help may not be easy either, but arthritis isn't something you can deal with by yourself. It really does take a team of people, working together, to manage your arthritis properly.
All medical doctors (M.D.'s) in Canada must complete at least two years of pre-medical university education, followed by another four years' training at one of this country's 16 medical schools, plus a year of residency in an accredited hospital before they're licensed to practice medicine as a general practitioner (GP). Family physicians spend an extra year after graduation doing postgraduate work in family medicine. They provide advice and care for most of life's common illnesses, including most mild cases of rheumatic disease.
In all probability, it was your family physician or GP who first diagnosed your arthritis, and he or she will be your primary physician in the years to come, though perhaps as only one member of your treatment team. If you have a mild to moderate form of the disease, your family physician or GP may be able to handle most of your questions and a great deal of your care, and that could be over a long period of years, so make sure you have a doctor you can trust and work well with.
Although your doctor is just one of the people who'll be working with you, he or she will probably be the team member with whom you'll develop the longest and most intimate relationship. To make that relationship as fruitful as possible, you and your doctor have to learn to trust and have confidence in each another.
The nurses you will encounter in a hospital, clinic, doctor's offices or community health centre are graduates of either a community college program or a university degree course. Many then go on to take further specialist training in the field of rheumatology. Nurses play a number of roles in a variety of settings, including conducting interviews to determine your medical history and assess the needs and problems you may have related to your arthritis, coordinating your care with other members of the health care team, administering medications and performing minor medical procedures. Nurses can provide counseling and education on a wide range of issues, such as pain management and medications, and they can also refer you to other community resources and health care professionals.
Even mild forms of arthritis can cause a host of problems with daily activities, but if you have a more severe form of the disease, you may need help with almost every aspect of your schedule — from dressing, bathing and grooming; to household chores and meal preparation; to shopping and going to work. You'd think an ideal solution would be to have someone there at all times to help you with all those tasks, but in fact that would contribute to your dependence on others — and it would eliminate a good deal of activity that may actually be good for you, physically and mentally.
An occupational therapist (OT) trained in arthritis management can analyze everything you do in a day and develop a program to help you protect your joints and minimize fatigue. If necessary, they're capable of helping you redesign your home or workplace to make it easier for you to work or simply get around. They can also make or have made a number of different splints, braces, orthopaedic shoes and other aids that can help reduce your pain and increase your mobility. Their goal is to prepare you, using assistive devices and adaptive strategies, to reclaim as much of your former life as possible.
There are a number of eye problems associated with various forms of arthritis (as well as the medications used to treat them), most of which require specialized treatment by an ophthalmologist, who specializes in the diagnosis and treatment of eye conditions. Certain types of inflammatory arthritis, for example (such as juvenile rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis) can sometimes cause inflammation in and around the eyes, and dry eyes (which can lead to infection), are a common problem among people with rheumatoid arthritis. Thus, regular visits with your ophthalmologist may be an important part of your treatment plan. Ask your doctor whether or not you're at increased risk of developing problems with your eyes, either because of your arthritis or your medications. If you're in a high-risk category, make sure you know how to recognize the warning signs and what to do about them.
Treatment of almost all forms of arthritis begins with what are known as conservative strategies — medication, rest, exercise, physiotherapy, perhaps assistive devices and modified activity planning. By far, the majority of people with arthritis never require surgery. However, in some rheumatic conditions, the damage to bone and cartilage requires surgical repair, which can range from cleaning up bone and cartilage debris in a joint capsule to complete replacement of a joint.
If you, your family physician and rheumatologist agree that your general health and particular joint problem might benefit from surgery, then you'll be referred to an orthopaedic surgeon, a medical doctor trained in the surgical prevention and correction of disorders that involve the locomotor structures of the body; that is, bones, joints and muscles, as well as other soft tissues, including ligaments and cartilage.
Note: Seeing an orthopaedic surgeon doesn't necessarily mean you will need surgery. The surgeon may recommend that you continue with a conservative treatment strategy for the time being and be reassessed at a later date. And don't think of surgery as a last resort; surgery is just one part of your overall treatment plan. For some people — someone with severe osteoarthritis of the hip, for example — surgery may even be recommended at an early stage, because it may be the most effective way to reduce your pain and restore mobility.
Not all surgery is done by an orthopaedic surgeon; some specialized procedures are performed by doctors trained in other areas, including neurologists (who specialize in the nervous system), plastic surgeons (who treat skin and other soft tissue disorders), and ophthalmologists (who deal with problems concerning the eyes).
Pharmacists are an often overlooked, but potentially valuable, member of your treatment team; choose one with the same care you'd select a doctor. After graduating from university, pharmacists spend several years at a school or faculty of medicine, acquiring a basic grounding in biology, physiology and disease, but with added specialization in medications and their use in the treatment of health conditions. If you find a pharmacist that you like and trust, become a faithful client. That way, he or she can keep a complete record of all the prescriptions you've had filled and can tell right away if there are possible drug interactions, and what the side effects might be.
If you're experiencing troubling side effects from your medication, and your doctor isn't available, check with your pharmacist; he or she should be able to tell you whether what you're experiencing requires immediate medical attention or if it's safe and appropriate to simply reduce your dosage. (Either way, be sure to report the event the next time you talk to your doctor. It's absolutely essential that your doctor know about any change to your drug regimen, so that he or she has an accurate picture of how your medication is working.)
Physiotherapists (PTs) who specialize in arthritis are trained to do a full assessment of your physical abilities, based on a detailed examination of all your joints' function. They note how much pain and discomfort you have in affected joints, as well as how much strength, flexibility and range-of-motion you have in both healthy and arthritic joints. Based on the results of the assessment, a PT can develop an individualized program that's designed to help you increase your strength, flexibility, range-of-motion, and general mobility and exercise tolerance through a wide variety of therapeutic treatments and strategies. These include exercise prescription, physical interventions, and relaxation, in addition to advising you on other techniques for reducing pain and increasing your overall quality of life. PTs can also refer you to other health professionals and community services for further measures that will help you adapt to your changing circumstances.
Podiatrists and Chiropodists
Four out of five people experience a foot problem sometime in their lives; some of those problems are the result of arthritic complaints. Most minor foot problems — such as calluses and corns, high and low arches and exotic — sounding (but common) ills like plantar fasciitis — are easily treatable, particularly by podiatrists, chiropodists and occupational therapists.
For more serious problems, especially those related to arthritis, you'll need the services of a podiatrist or medical doctor, particularly if you require surgery. Any major procedure requiring general anesthetic must be performed by an orthopaedic surgeon, dermatologist or plastic surgeon, but most minor surgery — and a great deal of non-surgical care — can be done by a foot specialist known as a podiatrist (or, for minor problems, a chiropodist).
A podiatrist is a D.P.M. — doctor of podiatric medicine. A Bachelor of Science degree is a prerequisite for education in podiatry, a four-year post-graduate program at one of seven U.S. colleges, followed by a hospital residency. Podiatrists can do soft-tissue surgery on the whole foot, and bony surgery on the forefoot, as it's called, which consists of the five long bones of the metatarsus and the 14 phalangeal bones that make up the toes. Podiatrists correct deformities, bunions, hammertoes, bones that are out of position, toes that are not straight and pinched nerves, as well as remove warts and nails.
Chiropodists' training consists of a three-year diploma course after Grade 13; they're licensed to perform minor surgery on the foot (though not as extensively as podiatrists). Podiatrists' and chiropodists' services are usually covered by provincial health plans.
A radiologist takes and 'reads' x-rays for radiographic evidence of conditions, such as osteoarthritis, rheumatoid arthritis and ankylosing spondylitis. Although x-rays can't show soft-tissue damage, they can reveal a number of other problems, such as the extent of damage to the bone in a joint; in some cases, x-rays can also show how well you're responding to your treatment.
People with arthritis often have questions about diet and arthritis. They might be concerned that some of the food they consume could interact with their medications, for example, or they may have problems with their weight — keeping it down or keeping it up; they may simply have trouble preparing food and shopping for groceries. Registered dietitian/nutritionists can provide assistance in dealing with these problems. They're a reliable source of information on diet, vitamins, food and nutrition, and they can help you make healthy food choices to achieve your health goals.
Note: Be careful where you get your advice: Anyone — whether they have any special training or not — can call him- or herself a nutritionist. A qualified dietitian/nutritionist has a four-year university degree in nutrition and dietetics, an internship or master's degree and registration with a provincial dietitians'/nutritionists' association. Furthermore, to keep his or her registration and keep pace with the changes in the profession, a registered dietitian has to fulfill continuing education requirements.
Many less severe forms of arthritis, particularly mild to moderate osteoarthritis (OA), can be managed effectively by your GP or family physician (with your active involvement, of course). But, if you have a severe case of OA, or a form of inflammatory arthritis, such as rheumatoid arthritis or lupus, your doctor may refer you to a rheumatologist. In Canada, rheumatologists are graduates of faculties of medicine who've spent at least three years after graduation studying arthritis and other forms of rheumatic disease, and all were successful in specialist examinations set by the Royal College of Physicians and Surgeons of Canada or the Quebec Corporation of Physicians and Surgeons.
All Canadian rheumatologists are trained at universities with arthritis centres (formerly known as rheumatic disease units or RDUs), whose mission is to provide exemplary care and teaching while maintaining an active research role. TAS helped to establish the RDU network in the '50s to encourage a multidisciplinary approach that would not only work toward solving the problems of rheumatic illnesses, but ensure the highest-quality care for people with arthritis.
As a result, rheumatology has acquired an increased visibility in the university setting, while RDUs have developed into a particularly fertile environment for the training not only of rheumatologists but also of allied health professionals, such as nurses, and physio- and occupational therapists. Today there are more than 285 rheumatologists in Canada. Many work in hospital settings; others are based in the community and are affiliated with local hospitals.
Social workers deal with quality of life, which is always compromised to some extent by disease. Most social workers can play two roles in your health care. One involves helping you to get the service you require from government departments, outside agencies and organizations that provide benefits, such as health insurance, pension plans or home support. This could also include offering advice on job retraining and finding adequate housing, or suggest solutions to financial problems. Social workers' other role is in the treatment area, providing help in dealing with depression and anger, assisting family members and helping to find meaningful activities to replace those lost through arthritis.
Many people experience a period of 'mourning' after being diagnosed with a chronic illness such as arthritis. It's perfectly natural to go through an emotional cycle of denial, anger, depression and withdrawal from everyday activities, because your life has changed and is seemingly out of control. Social workers can help you to come to terms with these negative feelings and gradually accept that arthritis is only one part of your life. Sometimes, talking to a friend or using your usual coping techniques isn't enough, and that's where social workers can help. Ask for a referral from your doctor or other health professional.
There are some differences in training between a psychologist and a social worker. Social workers are trained to provide clinical, face-to-face counseling. A psychologist with a Master's degree or Ph.D. is authorized to administer and interpret most kinds of what's known as 'psychometric testing' — intelligence (IQ) tests, certain measures of personality — which social workers are not allowed to do.
Note: Anyone — whether they have formal training or not — can call him- or herself a counselor and provide counseling services, so be warned: Not all 'counselors' are equal.