Managing Chronic Illness/Pain

The term “chronic conditions” is usually in reference to diseases or illnesses that are present for the entirety of one’s life. While they can be treated, in most cases, they cannot be cured. Most of us are familiar with common chronic conditions, such as diabetes, hypertension, chronic respiratory diseases, irritable bowel disease, neuropathic pain, migraines, arthritis, cancer, and even stroke. We know that in addition to the direct impact on the quality of life for the individual experiencing the issue, chronic conditions can lead to a higher demand on our health services, cause productivity losses, and impact workplace functioning.

There is likely no doubt in people’s minds that living with a chronic condition is a very difficult and challenging experience. In addition to the toll that day-to-day management can take on a person with a chronic condition, there is a higher experience of negative psychological and mental health impacts. For example, it’s estimated that individuals living with chronic physical health conditions are twice as likely to experience depression and anxiety compared to the general population, and we know that the presence of anxiety and depression then make for poorer medical outcomes.

Chronic Illness vs. Chronic Pain

It’s also important to note that chronic illness and chronic pain are tightly intertwined. Chronic pain refers to the experience of pain that may increase and decrease at times but is present for at least six months and often not expected to get better over time. It can be a standalone condition (such as fibromyalgia or chronic musculoskeletal pain) or secondary to having a chronic illness. As with experiencing any chronic condition, chronic pain has a negative impact on a person’s sense of wellness, impacts their daily functioning, and leaves people often feeling helpless and frustrated without the right interventions. The connection of chronic illness and pain, and psychological wellbeing are clearly tightly interconnected. However, there are ways to interrupt these vicious cycles.

An abundance of research on the links between chronic illness, chronic pain, and emotional stress have led to the development of tools and strategies that individuals can use to better manage their conditions and the psychological distress associated with having a chronic condition. At CloudMD we are proud to be able to offer those coping with chronic conditions a suite of supports. But what if you are the caregiver or partner, or the friend or colleague of someone who is dealing with a chronic condition? How might you feel? What can you do to help?

The Emotional Burden of Observing Someone Experiencing Chronic Illness or Pain

Watching anyone we care about face a challenge in life is tough. It takes a toll on us for many different reasons, from feeling helpless or inadequate in supporting them to even guilt and anger about what that person is going through. This can be even more difficult when the “challenge” is unrelenting, expected to worsen over time, or will be present indefinitely. All hope is not lost though when it comes to helping someone else. Just as there are ways in which the individual experiencing a chronic illness can learn to cope, there are strategies and guidelines for allies and supporters to be part of the treatment too.

First, as a caregiver or supporter, it’s important to acknowledge your own feelings and be mindful of the impact of what you are observing. You won’t be of much help if you can’t accept what the individual is facing and what you are facing as a result. We don’t need to get rid of all our negative feelings, whether it’s guilt, anger, or sadness, but when we accept that the situation is as it is, we can move that energy to more helpful strategies instead of trying to “fight” the situation. This applies whether you are watching a loved one or a peer at work.

This should come as no surprise, but if you are planning to take on more of an active role in supporting someone with a chronic condition – whether at home or in your workplace – you need to take care of yourself first. In case you need the reminder, we have to put on our own “oxygen masks” before we are of help to anyone else. What might this look like? At the very least, paying attention to your own physical and mental health (also known as good old-fashioned self-care) is essential. Only then will you be able to offer sustainable and meaningful support and reduce your own risk of burnout.

Other tips for those in an outsider role include:

• Keep the conversation going. It can take a lot for a person with a chronic condition to disclose what they are experiencing, what they are feeling, and their own fears and worries. They already know you can’t cure their condition, but you can lend an ear. Humans are social beings, and they benefit from knowing that others are there for them to listen, to empathize, and to offer support (when the time is right). As well, if you are ready to offer some type of support, be sure to listen for what that person might actually need. Support comes in many ways – instrumental (i.e., doing something for someone else), informational (i.e., providing guidance or advice), and even just companionship-type support (i.e., spending time together).
• Educate yourself. Many chronic conditions are invisible. Sometimes we think we understand the day-to-day toll, yet there might be a lot of variation in one’s experience and long-term effects. For example, don’t assume that you know how your colleague’s experience of migraines must feel because your Aunty Mina has migraines too. If you aren’t sure about how a chronic condition may manifest, find ways to learn more – for most common chronic conditions there are excellent websites operated by support groups with trusted and accurate information. As well, if you have a good connection with the individual experiencing the chronic illness, don’t be afraid to ask – just make sure you are asking to help support your learning about them, versus prying for information.
• Be patient and empathetic. Coping with chronic illness requires one to build a self-management plan that focuses on dealing with negative emotions, pain, fatigue, sleep difficulties, and stress, as well as developing accommodations and better communication and assertiveness skills. As an advocate or caregiver, you can support the individual by being patient and empathetic as they navigate these skills. Recognize that the workplace accommodations, the need to juggle appointments, adjustments to scheduling, or engaging in pacing strategies take time to develop and may need to change based on the course of one’s illness. With this in mind, pay attention to your own unrealistic expectations for others, as the individual with chronic illness is likely already worried about meeting their own expectations.

A few other tips to keep in mind:

• No one likes unsolicited advice. Be respectful of an individual’s privacy and have a whole-person attitude. Someone living with a chronic condition is a person first.
• Avoid ableism. Don’t assume to know what a person with a chronic illness can or cannot do. Be mindful of not leaving people out and discriminating in overt and subtle ways.
• Don’t dismiss what they’re going through. There is a time and a place for positivity. The challenges and experiences for someone living with chronic pain and illness are very real.
• Keep to your role as a friend, colleague, boss, partner, parent, or whomever. We know that people with chronic illness may have trouble asking for support or help from others when needed. Yet, we also know that simple social support can really benefit those with chronic conditions. Don’t forget about your existing relationship to each other.

With over 60% of Canadians aged 20 and older experiencing a chronic illness, its likely we are all going to be impacted in some way or the other in our lifetime. If you are in a position to support, advocate, navigate or even just be there for someone with a chronic illness, you can make the world of a difference to their lived experience.

Keep in mind that your workplace wellness program has plenty of resources you can use to help you manage your own mental health and wellness as you support someone with chronic pain or illness.