What is it and why should you do it?
Advocacy. It can be a scary word and an even scarier thing to do.
What does it truly mean to advocate? Sure, the dictionary says it’s “public support for or recommendation of a particular cause or policy,” but how does that translate on a personal level for someone living with a chronic illness?
To get a clear picture, we asked young adults who are living with SpA what advocacy means to them.
“For me, self-advocacy is a continuous process of hard work and unrelenting courage. Self-advocacy involves being proactive, preparing for appointments, and asking about new treatment options. It also involves having the courage to ask your medical team the hard questions. Advocating for yourself is one of the best things you can do when navigating the medical system!” Another young adult who lives with Ankylosing Spondylitis pointed out that self-advocacy goes beyond the doctor’s office, it relates to every aspect of life.
“Advocating for myself is something that I am still working on every day, because it can be intimidating, scary, and embarrassing.”
Okay so now that we know what it is, why is it so important? Firstly, if you’re reading this undiagnosed, suffering from low back pain and trying to find the cause, only a small percentage (0.5%) of people presenting with low back pain will have ankylosing spondylitis (a type of SpA). This means that it’s not the first thing your doctor thinks of, and the delay to diagnosis could be very long and have consequences. This is why we believe that if you suspect you are suffering from inflammatory arthritis it is imperative that you advocate for yourself with your healthcare professionals.
“I was dismissed by so many doctors who told me that my pain was related to growing or a sports injury. Physiotherapists told me to strengthen my core. Chiropractors told me to come in for adjustments. No one stepped in to suggest it could be something more. I had to say over and over and over again — “no, I think something’s wrong with me.””
Secondly, if you’re living with a chronic illness and past the diagnosis stage, advocating for yourself is still equally important. Now it’s about having open conversations with those around you, insisting on trying a different medication or requesting the necessary accommodations at work.
How to Advocate for Yourself If You Are Seeking a Diagnosis
As mentioned before, the time to diagnosis is often delayed and varies between 5 to 10 years after the onset of symptoms. Even more delayed diagnosis is seen in women, individuals who are HLA B27 negative and those who have a negative family history for inflammatory arthritis.
Delayed diagnosis leads to delayed treatment and may result in irreversible joint damage. This is why it’s important to be relentless when searching for a diagnosis.
The common signs and symptoms of SpA are the following:
- Back pain caused by inflammatory arthritis
- Gradual onset of pain
- Persistent pain in the lower back, buttocks and/or hips longer than 3 months
- Pain/stiffness in the back and /or hips worse with immobility, especially night and early morning
- Back pain and stiffness tend to ease with physical activity and exercise
- Tiredness and fatigue
What are some of the diagnostic features of SpA? According to ASAS (Assessment for SpondyloArthritis Society) the following clinical signs are indications of SpA:
- Inflammatory back pain
- Arthritis (joint point, reduced mobility)
- Enthesitis of the heel (inflammation of the tendon where it inserts into the bone)
- Uveitis (inflammation of the eye)
- Dactylitis (sausage fingers)
- Psoriasis (skin condition)
- Crohn’s/ colitis (gastrointestinal issues)
- Good response to NSAIDs (such as Advil and Motrin)
- Family history for SpA
- HLA-B27 (a genetic marker found in the blood)
- Elevated CRP (a blood test indicating inflammation)
- Sacroiliitis on imaging (inflammation of the sacroiliac joint on x-ray or MRI)
If you are not yet diagnosed and any of these signs and symptoms sound familiar to you, take the questionnaire.
You can take the results of this questionnaire to your next doctor’s appointment if you suspect that you may have SpA. Do not be shy to bring this up with your primary care physician.
Remember that you know your body best, and if you believe you are living with a SpA condition it is in your right to discuss it with your healthcare provider and to ask for tests to be run or for a referral to a rheumatologist.
If you suspect SpA based on your symptoms and questionnaire answers, then you may want to request some medical tests from your physician. The guidelines regarding tests and the order in which they must be requested vary from province to province. However, the most common preliminary tests may include blood tests for markers such as HLA B27 and CRP. A radiograph of the SI joints and spine are also often included.
“If I didn’t advocate for myself, I wouldn’t be as functional as I am now. After researching extensively, requesting to see second opinions and countless tests, as well as standing up to many doctors’ stereotypes about chronic pain, I was able to persuade my family physician that a very specific, unconventional treatment was right for me.”
If your test results are consistent with a SpA diagnosis, then you will need to be referred to a rheumatologist. If your results are not conclusive, you may need to request that your primary care provider refer you to a rheumatologist for further investigation. Sometimes you must be relentless, it may be a long and challenging process but do not give up, keep going until you get the care you are entitled to. In Canada, you need a referral to see a rheumatologist, usually coming from your primary care physician. The exact criteria for the referral vary per province, but the Canadian Rheumatology Association provides the following general guidelines that can be found here.
“You know your body and your symptoms better than anyone. That’s why advocating for yourself is so important.”
How to Continue Advocating for Yourself Post-Diagnosis
Advocating for yourself will be a lifelong journey, and it is not limited to the doctor’s office.
“Advocating for myself means not only letting my voice be heard in healthcare settings, but also in work, academic, and social settings. Advocating for myself means telling people “no,” when I can’t do something, defending myself when I am not taken seriously by friends or family, and educating ignorant people about my illness, even when it’s not easy. My body and health have to be my top priority — I have to push for that to make sure it happens in all scenarios.”
Below are tips for self-advocacy beyond the diagnosis stage.
Advocating for Yourself Within the Healthcare System
Prepare for appointments with your doctor. Write out a list of your top questions in order of prioritization to ensure your most important questions get answered. Consider taking a friend or family member with you who can take notes so that you can focus on your conversation with the physician.
Communicate openly with your physician and healthcare providers. Once you are diagnosed, your physician will create a treatment plan for you. It’s important to create treatment goals together in order for your plan to fit your lifestyle. Some goals that you may want to consider include pain management, treatment of comorbidities at the same time, convenience of the treatment and the ability to get pregnant on the drug.
Continue to communicate with your physician and healthcare providers. You may find that after a period of time you need to re-adjust your treatment plan or other factors relating to your health. This is why it is important to always be open with your healthcare professional and to continue advocating for yourself until you find the right treatment for yourself.
Educate Those Around You
Arthritis is often misunderstood in the general population; people think it’s one disease that mainly affects the older population. However, there are over 100 types of arthritis that affect people of all ages. While we all know how frustrating it is to constantly need to defend yourself and convince others that you are sick, despite being young and looking “fine,” it’s part of advocating for yourself as well as paving the way for others living with SpA. Teaching those around you about SpA helps them understand your disease and your experience better, and it also raises awareness regarding this potentially disabling disease.
Advocate for Yourself at School
While you are not required to disclose your illness to your professors, you may find that you require extra assistance. This can range from extensions on assignments during flare periods to requesting access to an ergonomic chair when writing exams. Generally, your school will have an accessibility office where you can arrange these accommodations without having to explain yourself to every professor you encounter. Whether you do it anonymously or not, it’s important to stand up for yourself to get the accommodations you need to have a successful academic career. Be sure to check out more information about SpA and post-secondary information here.
Advocate for Yourself at Work
Much like being a student, you are not required to disclose your condition to your employer. However, you may decide to disclose in order to receive accommodations that enhance your work experience. These accommodations may include flexible hours, work from home days, ergonomic chairs and standing desks. You may find that confiding in some trusted co-workers can also improve your work environment as it gives you people who understand and appreciate that you may need support from time to time. Be sure to check out more information about SpA and the workplace.
Advocate for Yourself In Social Settings
As previously mentioned, living with chronic illness usually means that your body and health need to be your number one focus. It can be difficult at times, but it’s important that you maintain this priority and speak up for yourself if something is hindering your well-being. This may include leaving a party early when you are suffering from fatigue, asking friends to organize activities that you can easily participate in or telling your date that you’re too uncomfortable to sit through a movie at the theatre.
Self-advocacy isn’t always easy and it’s a lifelong journey. The more you do it, the more comfortable you’ll be, and it’ll get easier. At the end of the day, advocating for yourself decreases your suffering and adapts your environment, allowing you to thrive.