How Chronic Illness Impacts My Eating Disorder Recovery

Many people who live with an eating disorder or disordered eating struggle not just because of the food, but rather as a maladaptive coping mechanism to deal with things like depression, trauma or anxiety. Another symptom that’s common with people who have eating disorders/disordered eating is lack of connection with their bodies. Someone who has an eating disorder will often avoid being present with their bodies, because the body becomes the “problem” to be fixed. That dissociation from the body can often be trauma-based. One treatment for eating disorders is finding ways to help someone be in their body and present with their body, to find a connection with it so the person can grow the desire to take care of it.

But what happens if someone who is trying to recover from an eating disorder also has a chronic illness that causes pain, fatigue or other uncomfortable symptoms? That complicates the recovery process, especially when it comes to trying to learn how to be comfortable, or at the very least, tolerant, of their bodies.

Living with Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, rheumatoid arthritis, and various other conditions that cause chronic pain, fatigue, nausea and a whole host of other symptoms, I have a very complicated relationship with my body. There are times I don’t want to take care of it because, well, if it’s not taking care of me, then why should I take care of it? If I’m fatigued or in more pain than my baseline, it’s difficult to make myself food to eat. If I’m nauseated most of the time, it’s very difficult to even want to eat.

So, what to do? What has helped me navigate my continued recovery while also living with chronic illnesses?

1. ACT (Acceptance and Commitment Therapy) has been helpful in identifying my values and learning how to live them. Following my meal plan isn’t about the meal plan itself, but rather what values that following my meal plan helps me strive towards. If I value knowledge, it’s difficult to retain information if my brain isn’t being fed. If I value connection, it’s difficult to connect with others if I am avoiding people because I’m deep in the eating disorder. If I value compassion, it’s difficult to be compassionate towards others if I’m not being compassionate towards myself.

2. Meal prepping when I’m having a decent day is important to be able to have food available on the days when even getting out of bed is difficult. Thankfully, I don’t know how to cook just one portion of a meal (ha!), so I have leftovers I can keep in the refrigerator and freezer to have for when I just don’t have the spoons to do more than microwave. When I’ve had an extended period of feeling terrible, then having access to freezer and shelf stable foods has been important, too.

3. Practicing gratitude is difficult when the pain, fatigue and brain fog makes me forget what I am grateful for. But writing down a running list of what I am grateful for, and what I am able to do is helpful for the days when I feel like I can’t do much. It also takes me out of my head and focus on the world outside of myself and outside of my body.

4. Acceptance of the reality of the chronic illnesses I deal with has also been important to my recovery journey. Acceptance doesn’t mean I like the situation, but rather I acknowledge that this is my reality. This also helps me to make decisions to take care of my body, even outside of fueling it. Trying to have a regular sleep schedule (difficult because I also deal with insomnia), regular medication schedule, keeping up with medical appointments, doing PT exercises, etc… All of these help make living in my body a bit more tolerable, which helps alleviate some of the anger and resentment of living in my body.

5. Therapy to help me explore and express my emotions and thoughts about living in my body has been vital. Having a therapist reframe my thoughts when I’ve been in a difficult place has helped me learn how to do it outside of sessions. Expressing my anger, resentment, sadness, grief and all of the other emotions that come with living with this body has helped me externalize them and not keep them to myself. Keeping those emotions inside has contributed to several relapses, so it’s important to keep talking about them.

6. Being gentle and compassionate with myself has been the difficult thing to learn how to do, but this is probably the most vital tool in my recovery toolkit. This helps me in stopping a lapse at just a lapse instead of the all-or-nothing thinking of “well, I’ve already messed up so far, so might as well keep going” mindset. Instead, when I have a lapse in eating disorder behavior, being able to gently ask myself what’s going on, journal, connect with a friend or my therapist, or do something that makes living in my body a bit more comfortable, it’s much easier to do the next right thing in recovery rather than feeling like I’m stuck there because I missed a meal or used another behavior.

This is not an all-inclusive list of everything that’s helped me work towards eating disorder recovery while also living with chronic illnesses, but these have definitely been the most effective tools I’ve tried thus far.

If you too are struggling to navigate eating disorder recovery and living with chronic illnesses, you’re not alone. Over the many years that I’ve tried to recover and end up relapsing, and trying to recover again, and relapsing again, I’ve met many other people who have developed an eating disorder in an attempt to cope with the uncertainty and lack of control living with chronic illnesses can bring. Let us be gentle and kind with ourselves as we navigate this particularly unique and difficult journey of recovering from an eating disorder while living in a chronically ill body.