Living With an Invisible Illness: Coping With Chronic Pain & Illnesses

By Dr. Sarah Carpenter

Living with chronic illness inherently has its own challenges, from processing difficult emotions such as grief, anger, confusion, embarrassment, disappointment, to having to entirely change your lifestyle and incorporate new habits to manage a condition you never asked for but must take full responsibility for taking care of. A challenge I often see working with patients living with chronic illness (e.g., fibromyalgia, rheumatoid arthritis, chronic pain, diabetes, etc.) is that of living with a condition you can deeply feel but nobody sees. You live in a world where those around you have no indication you’re hurting. Because there are no obvious signs you’re experiencing pain, discomfort, fatigue, weakness, etc., your experiences are often minimized, belittled, or invalidated. It is common to feel like you have to try to get others to believe your experiences. I see those struggling to make their case to convince others that their pain is REAL. That they are in fact suffering and it isn’t something that is necessarily in their control. Common experiences, such as daily pain and fatigue, are often attributed to psychological issues which invalidate the physical nature of these illnesses. This is truly an added burden to living with chronic illness when one necessarily doesn’t “look sick.” This can lead to an array of psychological issues, including increased depression and anxiety, as many perceive a lack of support, validation, and empathy, which are all crucial to finding the strength to cope and live every day. As such, it is imperative that those living with chronic illness work to educate themselves about their illness, validate themselves that their experiences are real, find useful resources, and improve their communication to advocate for their needs. In the process of doing so, they help give others the opportunity to also validate their experiences.

Here are some ways you can start this process:

1) Start having conversations. At first, it may feel tremendously uncomfortable to start talking about your illness. But in time, this will become like second nature. Talk to your friends and family about it whenever you can. This is your time to be candid, real, and open. Educate your support system about what your condition means generally, in addition to what it specifically means to you. You must express your inner world to help the outer world know how to help you. You are not a burden by doing so, your friends and family want to help and just need to understand exactly what you are experiencing in order to do so. If you are not sure how to express your experience, take some time learning the common language used by those who also live with your illness.

2) Communicate to others where your pain/discomfort is at on a scale from 1 to 10. For instance, if your pain/discomfort is at an 8, that communicates to others you may need more assistance, support, and patience. While if you instead are functioning at a 3 or 4, this communicates you are able to be more independent. This all helps to guide the actions of others, as well as to communicate to yourself what you need.

3) It is a great self-monitoring tool to routinely check in on your body/mental health and act accordingly to express your needs. Common needs include setting expectations, such as needing a quiet space, lights dimmed low, extra cushion and support for sitting, limiting sounds, etc. This information is important for others to know to help create an experience that will be positive for everyone. Again, you are not being a burden by asserting your needs, you are using your voice to help make life more manageable, and if explained in such a way, friends and family are very understanding.

4) Other needs that are often compromised are our social needs, as it is common to feel unreliable and therefore avoid making or committing to plans. Help others understand that you are not unreliable, your illness is. Explain in advance that depending on how your body feels that day, plans may need to change, but that you would like to try your best to follow through. Don’t avoid social outings due to fear of being perceived as unreliable, as this creates a whole other set of issues once isolation sets in. Show others you can be reliable in other ways, such as always sending birthday gifts, checking in and scheduling phone chats, and other ways to show you care.

5) Help friends and family use validating language when discussing your experiences, and share with them the following:

The following are some resources to help with education and support:

https://autoimmune.org/

https://www.multiplechronicconditions.org/patient-portal/

https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm

https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health