Tools to Support your Diagnosis Journey
Diagnosis can be a difficult and emotionally draining process. Learn about the different ways to get support during diagnosis, from talking to friends and family to seeking professional help. We hope you make use of these tools to support your diagnosis journey.
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The Journey to getting a Referral and a Diagnosis
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Getting a referral from your general practitioner (GP), or family doctor, can be challenging and incredibly frustrating. For many people, it can take 7-10 years to finally be diagnosed with AS. There are many reasons but the main reason is that GP’s may not be familiar with many of the symptoms associated with the spondyloarthritic conditions.
Additionally, depending on where you live, there may not be a rheumatologist close to you. Another issue is there are not enough rheumatologists in Canada to care for all of the people living various forms of arthritis. In Canada we have approximately 270 rheumatologists and more than 4.5 million people are living with some form of arthritis – clearly not enough rheumatologists to treat all of the people who need treatment. There are also regional disparities in where specialists practice (more in urban centres vs rural communities).
However, there are a few things you can do that will be helpful:
- Do research to determine if you have the symptoms of inflammatory arthritis. [take our assessment survey results with you]
- Gradual onset of pain
- Persistent pain in lower back, buttocks and/or hips longer than 3 months
- Pain/stiffness in back and/or hips worse with immobility, especially at night and in early morning
- Ongoing joint pain and swelling
- Back pain and stiffness that tends to ease with physical activity and exercise
- Ongoing morning stiffness, lasting more than an hour after rising
- Inability to continue daily work and living activities
- Inflammation of the eye (ie. iritis or uveitis)
- Tiredness and fatigue
- Tell your doctor of your symptoms and that you believe they are similar to inflammatory arthritis. Keeping a journey can be helpful.
- Tell your doctor about any history of inflammatory arthritis in your family.
- Once your GP agrees your symptoms could be inflammatory arthritis, you may have x-rays, MRI’s and blood work done in advance of being referred to a rheumatologist. The referral letter will include the following:
- The suspected diagnosis of inflammatory arthritis and possibly more specifically, a spondyloarthritic condition.
- Your medical history and any clinical findings. These may include morning stiffness, weight changes, fever patterns, mobility and number and types of joints affected.
- Copies of all reports, including MRIs, x-rays, and letters from any other specialists consulted.
Earlier and quicker diagnosis and appropriate treatment help prevent disease progression, joint damage, decrease in pain and swelling, and possibility decreasing forms of permanent disability.
If you are having difficulties getting a referral, be persistent. Remember that you are entitled to get the care you deserve. Don’t take “no” for an answer.
Support your Diagnosis Journey with a Treatment Plan
Your treatment plan should be unique to your personal medical situation, needs, goals, and personal circumstances. A plan that may work well for one person may not work for another – it is important your doctor, and other healthcare professionals, understand you. Remember to always be completely open and honest. Don’t down play any of your symptoms and be fully prepared and engaged in all your appointments.
Building a well-rounded, effective treatment plan includes several things:
- Healthcare team: your team can include more than one healthcare professional. Members of your team can be made up of several different professionals, depending on your disease(s) and personal situation. Common healthcare professionals on your team could include:
- Rheumatologist
- General practitioner
- Internist
- Dermatologist
- Ophthalmologist
- Orthopedic surgeon
- Pediatric rheumatologist
- Rheumatology nurse
- Physiotherapist
- Occupational therapist
- Dietician
- Counselor/Psychologist
- Set personal goals: through consultations with your team of healthcare professionals and loved ones, collaboratively agree on realistic goals. Goals should be based on what is realistic within the framework of your life. Setting goals will allow you to measure success and will help your healthcare team to understand where you want to go and help them to provide you with the tools to get there. They want nothing more for you than improved outcomes.Your goals should be very specific; for example:
- “I want to be able to go back to work 30 hours per week”.
- “I want to travel without aids”.
- “I want to walk regularly or do yoga”.
- “I want to play with my children or grandchildren”.
- Be informed: learn and understand as much as you can about your condition. This will help you make informed decisions and ask the right questions. You will need to make important decisions about options-possibly including medications, surgeries, and complementary therapies. It’s important to know the risks and benefits of treatments, and then, with input and insights from your team, make the decisions that is right for you.
- Live a healthy lifestyle: a well-rounded treatment plan for Spondyloarthritis is critical. It includes maintaining a healthy body weight, appropriate levels of exercise, enough rest, good nutrition, and support from your family and friends. Try to find tools that work for you to reduce stress, anxiety and fatigue that are common symptoms of SpA.
- Share: be sure to share your condition and goals the people closest to you. This includes family, close friends and possibly co-workers. A support system will be a valuable part of your journey.
Remember that you and your healthcare team are the experts in your disease. Be careful where you find information – make sure its credible. Do not allow anyone, even the most well-meaning family members or friends, influence your treatment plan.
Working with your Healthcare Team to support your diagnosis journey
Be sure to make the most out of the time you spend with members of your team. Here are some tips:
- It is important your healthcare provided (physio, OT, chiropractor) have knowledge and experience treating SpA.
- Feel comfortable with your HCP, and that you relate well on a personal level and he/she understands your goals and what you want to achieve from treatment.
- Do your part. Be committed to your plan and follow-through. You can only succeed if you are committed to the goals you have defined and the plan you and your hcp have put together.
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- Attend appointments.
- Actually make the changes agreed to.
- Commit to exercise program or lifestyle changes agreed upon.
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- Keep track of any difficulties by keeping a journal or notebook. Record what and why things are difficult. and record the parts of your life that having arthritis has made most difficult.
- Be honest to yourself and your hcp. It’s important your healthcare providers know how you are feeling, what you are doing or not. They want to help you but can’t if you are not honest. If something isn’t working he / she can alter your plan and provide solutions. They want to see you improve and be successful and lead active, independent lives.
- Evaluate progress and celebrate successes. Sometimes it takes time to get it just right. Remind yourself that what works for one person may not work for you. Don’t get frustrated. Be open to trying new and different things
BE PREPARED FOR APPOINTMENT
We can’t stress how important it is to take time to prepare for your appointments. If you don’t prepare, your appointments will likely not be as engaging and meaningful as they should be. Communicating openly and effectively is critical and being organized and prepared will help make the most of your appointments.
Depending on where you live, access to a rheumatologist may not be readily available. There is also a decline in the number of rheumatologists across the country and getting in to see one can be very difficult. It can vary on how long Canadians have to wait to see their healthcare team. People in urban areas generally have a shorter wait while those in rural areas have a much longer wait time. Because rheumatologists are in high demand, it is important to make the most of your appointment time.
Being prepared for appointments should be started weeks in advance.
Before your appointment:
Be sure to work through the checklist to help prepare for your appointment. This will save you time and will give you confidence that you have provided your rheumatologist with all the critical information related to your health.
Bring a family member or friend with you to your appointments, especially at the beginning of your disease experience and when you are trying to build a treatment path suitable to your health goals. This can also help people in your life to understand the seriousness of your disease and give them the opportunity to also ask questions. In addition, it provides someone to listen and take notes; often, especially just after diagnosis, patients are frightened and overwhelmed so having another person there to keep the details straight can be very helpful.
Be honest about your activities. If you have missed a few doses of your medications, if you haven’t been sleeping well (be sure to note how many hours per night), if you have been enjoying a glass of wine with dinner, or if you haven’t been exercising. Answer your doctor’s questions honestly. They will appreciate your openness and it will help them to advice you in an informed way.
Keep on top of details. Know when your prescriptions need to be renewed, when you have appointments to see other specialists for issues related to your arthritis or complications, and when any diagnostic tests are scheduled for.
If you feel that your doctor has heard your concerns during appointments and responded in a way that helps you to live better with your disease, pass those thoughts on to him or her. Doctors appreciate hearing and knowing that they are helping their patients.
We have adopted a checklist to help you plan for your appointments.
Tools to help support your diagnosis journey
Virtual Appointments
If your appointment will be held virtually, we encourage you to use the attached check-list to ensure you are prepared and your surroundings are appropriate for a virtual appointment.
NOTE: Whether your appointment is in person or virtually, be sure to take notes. You will be glad to have the information after your appointment to refer back to, and you will avoid forgetting anything important that was discussed. Having someone join you (a family member or friend) is always helpful; particularly when you are first diagnosed. Your companion will be able to help you remember what was said and be valuable support.
Tips to keep in mind during your appointment
- Be open and honest.
- Make sure all your questions are answered and understood.
- If you don’t understand something; ask for clarification or to be explained again more simply.
- Don’t feel rushed – before you leave, make sure your questions have been answered and you understand next steps. Unanswered questions will leave you frustrated and as a future appointment may be several months away.
- Be on time.
- Rheumatologists are busy – be understanding and patient if you need to wait. Going into an appointment angry or frustrated can lead to a less than satisfactory appointment.
Tips to keep in mind when talking about your treatment plan:
- If possible, try to be familiar with the various classes of medications approved in Canada to treat your diagnosed condition.
- Understand what the long- and short-term effects are of your diagnosis.
- Ask about how the treatments your rheumatologist is suggesting will affect you and what the side effects may be.
- Be sure your rheumatologists are aware of all the medications you are taking including any prescribed by your family doctor or another healthcare professional.
- Ask about when you can expect to see any changes in your condition. It’s important to be realistic and understand everyone reacts differently to medications. What may take someone 4 weeks to see a difference may take another person 2 weeks or 16 weeks. Don’t under any circumstance stop taking prescribed medication without a conversation with your rheumatologist first.
- Repeat back any change in dosing or medications to your rheumatologist to ensure you’ve understood what the change are (ie. increase in dose or frequency, adding a new medication or how to effectively change a medication)