Every diagnosis brings on unique challenges. As an individual becomes aware of symptoms affecting their wellbeing, navigates the health system, receives a diagnosis, and then learns to manage the disease, the way they see their body and interact with their environment may change significantly.
In the US alone, it is estimated that 24 million people are living with an autoimmune disease. There are about one hundred known autoimmune diseases, some of the most common being type 1 diabetes, multiple sclerosis, and lupus. Unfortunately, the number of people with autoimmune diseases grows every day.
As health and nutrition coaches, it is likely that you will work with clients who are living with autoimmune diseases. Health coaches do not diagnose or treat autoimmune diseases; however, as health behavior change and support specialists, to improve the quality of your coaching practice, you should be aware of both the general experiences and the varied and multidimensional experiences of clients diagnosed with an autoimmune disease.
In this article, we present four ideas to keep in mind when working with clients who are living with autoimmune diseases.
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Autoimmune Disease May Not Be the Reason They Have Sought Out Your Support
Your client may disclose early on in their coaching process with you that they have been diagnosed with an autoimmune disease.
However, because they have an autoimmune disease, or any other condition, for that matter, it doesn’t mean that is the reason they have sought your support
For example, you may have a client who is living with type 1 diabetes and feels they are effectively managing their condition with their physician’s advice. While they want you to be aware that they are living with type 1 diabetes, they have come to you with support in adopting a sustainable fitness plan and quitting smoking. While both physical activity and quitting smoking are important for type 1 diabetes management, your client may prefer that type 1 diabetes not be at the forefront of their coaching process with you.
If information about an autoimmune disease diagnosis was provided to you, you could proceed in two ways. First, you can ask your client if they want to focus on autoimmune disease management in their coaching plan. Second, you can ask them more broadly what they would like to focus on while working with you.
Everyone Experiences Autoimmune Disease Differently
Lists of common symptoms and signs associated with different autoimmune diseases are important for disease diagnosis and monitoring disease management.
However, experiences aren’t defined by a list of symptoms.
For example, imagine you have two clients, Thomas and Penny, who have been diagnosed with multiple sclerosis (MS). Thomas may have fatigue and vision problems as the primary symptoms of his MS, while Penny may have problems with mobility and pain. Both of them have the same diagnosis but different ways they experience the disease.
Another thing to keep in mind is that other factors affect a person’s experience with autoimmune disease besides symptoms. To continue with the examples above, imagine that Thomas had access to healthcare, and Penny did not. Thomas may have felt confident seeking out a provider early on once he started to notice vision problems. The access to healthcare and early diagnosis, in addition to feeling like the care he received met his needs, changed his experience with multiple sclerosis.
Penny, on the other hand, may have spent months, or even years, trying to navigate the healthcare system and saving up for appointments with specialists who would accept out-of-pocket payment. In the meantime, her symptoms worsened. When she finally got a diagnosis, she worried about making enough money to purchase the corticosteroids and interferon beta medications prescribed to her.
It is vital for health coaches to be aware of the varied experiences of people with autoimmune disease as they relate to signs and symptoms and other factors that affect other dimensions of their health and wellbeing.
Autoimmune Disease Risk Is About Much More Than “Lifestyle Choices”
People living with autoimmune diseases and other chronic diseases are more likely to face discrimination based on their health status. In a society where there is significant pressure on individuals to make lifestyle choices to prevent disease, it can be mistakenly assumed that people with chronic diseases have made poor lifestyle choices.
When coaches and other health professionals adopt this mindset, they may shame their clients, making them feel solely responsible for their condition.
While lifestyle factors like physical activity, nutrition, and stress levels can impact autoimmune disease risk and management, it is incorrect to assume that clients have total control over these factors and that lifestyle is the only element that influences disease risk and management. Social factors, environmental factors, and genetics also have a significant impact on disease risk.
A person who uses public transportation and lives in an area without markets or grocery stores will have a much more difficult time gaining access to fresh fruits and vegetables. This, in turn, may affect nutritional status and increase their likelihood of consuming ultra-processed foods.
Another client who has experienced childhood trauma will have a greater risk of developing an autoimmune disease than someone who hasn’t experienced childhood trauma, even if they make similar lifestyle choices.
People Living with Autoimmune Diseases Often Face Complex Challenges to Their Holistic Wellness
When a person is living with an autoimmune disease, they often face challenges to their health and wellbeing daily. One way to visualize these complex challenges is by thinking about the way an autoimmune disease can impact the seven dimensions of wellness.
- Physical wellness: The biomedical perspective prioritizes physical wellness, and autoimmune diseases are diagnosed based on measures of physical wellness. A lack of physical wellness may be at the forefront of the experience of people with autoimmune diseases. However, it cannot be assumed that this is your client’s priority or that this dimension is the one requiring the most attention and support.
- Emotional wellness: People living with autoimmune disease are more likely to experience emotional and mental distress compared to those living without autoimmune disease.
- Occupational wellness: The job environment may present barriers of access to people with autoimmune disease. People with limited mobility or who require different types of support often have more problems seeking jobs than those without physical limitations and different needs. Policies within companies and organizations, like paid leave, sick leave, and insurance plans, may also make a person living with an autoimmune disease feel unsupported and disadvantaged.
- Interpersonal and social wellness: Community support systems are important for everyone. A person living with an autoimmune disease may or may not have the support that makes them feel valued and cared for.
- Intellectual wellness: Autoimmune disease symptoms may make a person living with autoimmune disease feel like they are unable to access or benefit from educational or training opportunities.
- Spiritual wellness: Living with autoimmune diseases may impact a person’s spiritual wellness in varied ways. For example, it may lead to a person placing greater importance on their spiritual wellness, they may question their existence or purpose, or it may strengthen their relationship with their spiritual community.
- Cultural wellness: The culture the individual identifies with may have a particular way of viewing and treating autoimmune diseases and the people affected by them. Whether a person with an autoimmune disease identifies with or feels at odds with these practices may significantly affect their cultural wellbeing.
The examples and scenarios above just hit the tip of the iceberg when it comes to the complex challenges that people with autoimmune diseases may face. It is also possible that a person living with an autoimmune disease doesn’t feel like they face more challenges than the general population.
Autoimmune disease is common and on the rise. Health, nutrition, and fitness coaches are likely to have clients living with an autoimmune disease at some time in their careers. While coaches do not diagnose or treat autoimmune diseases, you may be sought out to support a person living with an autoimmune disease in making desired changes in their lifestyle.
It is important to avoid making assumptions about people and their experience with autoimmune disease; while it is useful to be aware of the statistics and common symptoms, it is equally, if not more important for coaches to be aware of the variety of experiences and challenges of people living with autoimmune disease, and more importantly, be open to supporting them with their health goals.