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15 Things Every Caregiver Should Know About Navigating Eating Disorders

NEDA Staff

Knowing the right thing to do or say is not always easy, and there is no one-size-fits-all solution to navigating eating disorders. In fact, the “right thing” to say one day may be the “wrong thing” to say the next. It is a challenge both for the individual battling an eating disorder and their support system. 

In honor of World Eating Disorders Action Day, we’re focusing on the caregivers of those with eating disorders. There will be a number of ups and downs, advancements and backtracks during your loved one’s journey to recovery. To get you started, here is a list of 15 things those in the recovery community want all caregivers to know:

1. “I wish they knew this wasn’t a choice and I don’t mean to hurt them when I’m struggling.”

2. “This isn’t their fault and not to blame themselves or that they haven’t brought us up correctly. It’s an illness and no one’s fault.”

3. “Try to understand me. Read up on my disorder; find out all you can about the eating/restricting/self-harm/depression.”

4. “I wish they understood how complex eating disorders are and how it’s not just about weight restoration; there must be a mental transformation as well.”

5. “So much of the battle is internal and invisible from the outside looking in. I’m starting at the baseline where food and body are constantly on my mind. From the moment I wake up to the moment my head hits the pillow. To try to take those disordered thoughts and not only recognize them but also attempt to question them and change them--it is the most taxing and difficult thing I've ever had to do mentally.”

6. “Eating disorders come in all shapes and sizes!”

7. “Recovery is a baby step process and we can't be expected to quit this disease cold turkey. We need to just be encouraged and to look at the little things we do. It’s hard to want to get out of the comfort zone that is our eating disorder.”

8. “Showing love and genuine concern is the best way to help someone with an eating disorder. Anger or condemnation is never helpful. Loved ones must also try to speak the truth and rationalize with the ED sufferer in a firm but respectful way, because EDs are mental issues that damage our ability to be able to think rationally all the time.”

9. “I wish people knew that it's not as simple as 'just eating.’”

10. “The physical progress and mental progress in an eating disorder are two separate things. Someone can be making physical progress yet still be struggling just as hard mentally, and vice versa. Their support is needed regardless of the circumstance.”

11. “Tell me you are proud of me for eating, for winning a small battle today and for taking even the smallest steps.”

12. “I wish my loved ones asked me basic questions about my illness and how I felt about it. By simply asking, ‘How are you doing?’ or ‘Can you explain x to me?’ and holding space for the person's answer, while responding with empathy is a powerful tool in showing love and understanding for someone suffering with an eating disorder. I found this to be the most helpful on my journey to recovery, but many friends and family members don't feel comfortable talking about my illness. I think avoiding the conversation has to do with the stigma attached to mental illnesses in general.”

13. “I want friends, family, professionals, and society to know that just because I ‘look’ like I am ‘better’ does not mean that I am fully recovered. I still struggle and some of my lowest points have been when I was at a ‘healthy’ weight. Eating disorders don't discriminate and do not have a certain look. The way my body looks is not always an accurate representation of how I am doing mentally. Sometimes every moment of every day is a fight. Please be patient and compassionate.”

14. “That every day is a different battle than the one before. That just because ‘you were doing so well’ one day doesn't mean the next day won't be a huge struggle and that is okay. It's a roller coaster of a fight and loved ones/caretakers need to know that that's ok, and to be there just as much on the good days as the bad.”

15. “Caregivers need to know that THEY need support too. Caregivers should have their own therapists and should make sure to set time aside for their own self-care. Caring for someone with an eating disorder is extremely challenging and they need to know they need and deserve support, too.”

For recovery resources and treatment options for yourself or a loved one, call the National Eating Disorders Association Helpline at 800-931-2237.