Blog Post 91: Invisible Illnesses, Guilt, Shame, and Loss

Further to our chronic fatigue post, we want to talk about the guilt and shame that can come with invisible illnesses. These difficult emotions can arise when we have to cancel plans, or because we can’t do as much  - we don’t have as much energy, we have to ask for help. We can feel dismissed when our friends and family don’t understand the illness, and dismissal brings shame. For Type C people who like to do a lot for other people, it’s hard when we can’t - we feel guilty and worried we are letting them down. 

We can also feel a sense of loss. We may have lost part of our lives - activities we can’t do anymore - to the illness, which can bring sadness. We may have also lost friends who don’t understand and are not supportive. People love Type C’ers who do a lot for them and are always there to lend support and a listening ear. Often we attract needy people - and they don’t reciprocate in our times of need. It’s a difficult lesson to learn that some of our friends aren’t actually supportive.

I (Anna) also tend to feel a lot of guilt and shame when I don’t stick to the regimen that works well for me. I get stuck in a cycle of doing the “right” things, feeling more energy, slipping up, feeling awful, then beating myself up for falling off the wagon. 

There are a few important strategies to consider here that can help. The first is to rest when we need to, and sit with the guilt of resting. In a society that values productivity and getting things done, this is difficult - but our bodies undoubtedly need rest, and we must recognize that pacing ourselves will be healthier in the long run. The second is to notice self judgment. It can be very difficult to stick to a rigid routine, and we must be kind to ourselves if we indulge ourselves from time to time. We can think about what we would say to a friend - we would not be so hard on this friend. Finally, we must be aware of toxic friendships and work to distance ourselves. If we are not receiving the support that we deserve, it can be time to move on and place our (limited) energy into those relationships that are more balanced.

A few resources that we also want to mention for people struggling with chronic illness: the book Radical Hope by Kelly A. Turner, Ph.D. makes many important points about lifestyle changes that can help with chronic illness. Dr. Nasha Winters’ deep nutrition approach outlined in The Metabolic Approach to Cancer has helped many people improve their internal terrain and better manage chronic illness (not just cancer). For women, the books Unwell Women by Elinor Clighorn and The Lady’s Handbook for Her Mysterious Illness by Sarah Ramey can make you feel more seen and heard - as well as the documentary Unrest by Jennifer Brea.