Self-advocacy Tips

Patient research shows that people with arthritis and their healthcare providers may each be speaking a “foreign language” to communicate what is important to each other. While both patients and HCPs want to communicate clearly, a communication gap exists, and that gap results in some patients not getting the treatment results they and their healthcare team expect or desire. Here are some guidelines to help you self-advocate with your healthcare team.

The essentials to effective communication with your healthcare provider

• When you are in the exam room, avoid using mobile devices. It seems like common sense, but in the digital age people sometimes forget that phones and other devices are a distraction. It might also be perceived by your rheumatologists that you are disinterested in what they are saying without meaning to.
• Do your best to make and keep eye contact with your HCP during a conversation. It actively shows them that you are open and interested in what they are saying and helps to have what you are saying be better received or heard.
• Do your best to understand all of the information being presented to you. If needed, ask questions and reconfirm by repeating what was said to you, back to your HCP.

Getting ready for your appointment with your healthcare provider

• One of the best ways to get ready for your appointment is to think carefully about the questions you want to ask during the visit. Write down your list of questions and concerns before your appointment. Do your best to limit it to 3 questions. If you have more, select 3 that are the most important for you to ask and have answered at that visit, and leave the list behind and ask that someone from your HCP’s office provide the answers by email or phone later that day or week.
• Consider bringing a close friend or family member with you as emotional support and to have another “set of ears” in the room.
• Take notes about what the doctor says or ask your friend or family member to take notes for you. These notes can become part of a journal that helps you keep track of what was discussed at each visit.
• You have the right to get copies of all of your medical records. Knowing how to access your medical records is important because it can help you keep track of test results, diagnoses, treatments plans, and medications. These will help you prepare for your next appointment.
• Make sure to ask for the HCP’s contact information and their preferred method of communication.

Setting treatment goals with your rheumatologist

• Setting treatment goals is one of the most important things you and your arthritis specialist or rheumatologist will do together. Research shows that rheumatologists say they feel satisfied with their communication with their patients. However, well over half wished they had discussed goals and treatments with their patients. 
• The primary treatment goal for rheumatologists is to help their patients achieve a state of “clinical remission” (when the disease is completely inactive), or at the very least, low disease activity. 
• Research reports that when patients are asked to think about their inflammatory arthritis (IA) medication(s) in particular, and what treatment success looks like, they say not being in pain anymore and being able to lead a better quality of life. 
• IA patients also feel that getting and exchanging information with their rheumatologist leads to more successful management of their disease. 
• The four points above highlight the importance of finding a common language between you and your rheumatologist. For example, rheumatologists need to explain to their patients that the treatment goal they want for you – clinical remission – will also help their patients achieve their goals – no pain and better quality of life. 

Making a treatment plan

• Research shows that setting treatment goals and making a plan to achieve them results in patients with inflammatory arthritis (IA) getting better.
• After you have set treatment goals with your rheumatologist (like, “I want to be in less pain”, or, “I want to get back to full-time work”), you can begin to make a treatment plan. 
• A treatment plan clearly outlines the things you and your rheumatologist will do together to help you (and them) achieve your goals and best manage your IA. It is usually a written document you create on your computer. Think of it like a “contract” to get better. 
• A sample treatment plan for you will include these things: 
  • Clearly stated goals (Example, “I love to walk. I want to get back to walking around my neighbourhood so that in 6 months I can go on a walking vacation with my family.”) 
  • A list of steps you will take to reach your goals (Example: “I will create a ‘walking journal’ to track my progress and invite a few people I know who enjoy walking to join me, so I don’t have to do it alone.”) 
  • Things you think might prevent you from reaching your goals (Example, “Not protecting the time in my day to get in my walk.” 
  • Things you will measure that will tell you whether you are gradually reaching your goals (Example: When I started walking, I could only do 1 block each day, and after 5 weeks I can now walk 6 blocks every day.) 
  • A list of rewards you will give yourself along the way to motivate you to reach your goals (Example: “When I can walk 6 blocks every day, I’m going to buy myself a new pair of walking shoes.”) 

Making treatment choices with your rheumatologist

Research shows that when patients with inflammatory arthritis (IA) agree with their rheumatologist on their diagnosis and treatment prescription, they actually do better on the treatment. Finding agreement on and having confidence in your treatment plan increases your willingness to follow (also called “adherence”) the treatment plan, and as a result, get better.

A very important research finding is that patients with IA define treatment success as no longer being in pain and seeing improvement in their quality of life. Rheumatologists think success is getting your disease into remission or at least low disease activity. They are one in the same, really. The treatment goals of disease remission or the lowest disease activity possible results in less or no pain and big improvements in quality of life.

Explaining arthritis to the people in your world

Another self-advocacy challenge for a person living with arthritis is how to communicate your experience with family and friends, your co-workers and employer. At times, you may need to ask for consideration or help when needed, share your arthritis experience with your life partner and understand how they themselves may be experiencing difficulty dealing with your diagnosis and disease experience, and have confidence to raise these issues with your rheumatologist.

Arthritis is misunderstood or not well understood by the public. Most think “arthritis” is one disease when in fact there are over 100 different types. It can be very frustrating for the person newly diagnosed with arthritis to explain that to family, friends, co-workers and employers, as well as strangers they encounter and interact with through their days. They, themselves are overwhelmed by the disease and may not understand it fully.

While inflammatory arthritis is a complex disease whose cause is unknown, there are ways to help the people in your life better understand what you are facing. Directing them to research-based on-line reading sources, like jointhealth.org and others, is a good place for them to start their learning process.

Advocating at work

Arthritis is the leading cause of work disability in Canada. Arthritis typically occurs during prime working years, between ages 35-50. Dr. Diane Lacaille of the Arthritis Research Canada has conducted studies to determine what workplace factors are closely linked to the risk of a work disability lasting six months or longer. She found that high physical demand, low job independence (i.e. minimal control over the pace of work and how duties are performed) and poor support from co-workers aggravated arthritis symptoms and accounted for longer absences from work. If no obvious changes need to be made to your work space, your schedule, or your job position, you may decide not to tell people you have a serious type of inflammatory arthritis (IA), like rheumatoid arthritis, at all; there is no legal requirement for you to disclose your IA to your employer or fellow employees. Or perhaps you will begin with telling one or two trusted colleagues, as a way of testing the water and getting practice. It’s up to you. But do bear in mind that people who don’t know you have arthritis won’t know you may need support from time to time. And if at times you need to take frequent breaks or delegate certain tasks, resentment may build if people don’t know the reason and support you.

Flexible work schedules are particularly important for people with IA:

• flexible time allows workers with arthritis to start and finish later, avoiding mornings that are particularly difficult due to increased pain and stiffness;
• split shifts allow shorter consecutive hours of work, allowing to rest;
• right to refuse overtime, especially when disease is not well controlled, without fear of being judged as lacking motivation or commitment.

Reduced hours is a common strategy used by workers with arthritis to remain employed, and partial leave is useful when dealing with flare-ups of arthritis. A flexible work location is very important, as difficulty commuting is common for people with arthritis who get stiff and sore with immobility and is a known risk factor for work disability. Availability of short-term sick leave allows people to manage their disease during exacerbation of their arthritis or when dealing with surgeries or other complications. Educational leave allows some workers with arthritis to obtain additional training for responsibilities or job types that are better suited to having arthritis. Rest periods are particularly relevant to workers with arthritis to restore their energy and maintain their productivity.

Collective efforts are needed to change the stigma associated with discussing arthritis with employers and change workplace culture.  Changing workplace policies won’t be enough to achieve more flexible and accommodating workplaces; we must change workplace cultures and attitude if we want real change to happen.