By Martina Candiago, Windsor, Ontario, Canada
No education about eating disorders could have prepared me for the disconnect, loneliness and isolation this illness brings not only on me, but also within the entire family. Without minimizing the experience of those directly affected by any long term illness, I would like to share a caregiver’s perspective, and the evolution of these feelings.
If I consider how long it took me to adjust my own beliefs and instincts by going against my grain to understand FBT (Family Based Treatment), how can someone who is on the outside of my reality even slightly comprehend what is going on in my household? It is almost like I had to start believing the earth is flat now, and I had to get the others on board with that concept. Hence, the disconnect was inevitable.
I don’t think people would normally give a thought to what it really means to feed someone who doesn’t want to eat, especially if your child already fits the social norm of body image. The details would be shocking: consistent planning of high calorie meals and snacks, considering fear foods and their tactical introduction, giving yourself a pep talk Tony Robbins style before each meal because each meal meant defiance and anxiety with appropriate extreme behaviours such as screaming, throwing food and plates, and vomiting, all while being called nasty words and wished death upon you; not to mention each meal took up to an hour and we have to do 6 of them, for many months. Add a steep learning curve about this illness on the go, shielding and tending to your other child/children. Bonus: 24/7 suicide watch for months.
If this is not challenging enough, let’s add a spouse who is not willing to educate himself about this illness and undermines your hard work, or perhaps no spouse at all. I am sure many of you encountered many more challenges to this traditional scenario of FBT. When my daughter was in the hospital, my son had to have a procedure done for his heart condition 4 hours from our city. It felt like Sophie’s Choice. My spouse might not have been helpful with the eating disorder but he was with my son. Before you know it, the world starts shrinking to the confinement of your house with regular runs to a grocery store. The isolation is physical and conceptual, intensified by navigating in a mirror maze where we try to separate the illness from our child. If I struggle to not take the verbal abuse personally, how could someone else understand this mind twister?
Already exhausted, trying to bring at least your closest one on board takes another chunk of your psyche. I have a younger son who started to despise his sister. He tried so hard to cheer me up with his boyish behaviour which I didn’t take well, until he started to close down on me as well. The isolation takes on another layer and the confinement of your house starts shrinking into the size of the dining table where it is only you and your child with an eating disorder sitting. Everyone knows what comes next, disappears into their rooms, and you are the only one who has to face anorexia nervosa head on.
This doesn’t last forever, though it will feel like that. Eventually, we start emerging from the kitchen to an outside world, easier going days might appear, or even a meal with no complaints, or tackling a fear food, seeing glimpses of your child with no anorexia puppeteer … these bright moments are inconceivable to the outside world. Everyone listen! My child just ate a whole cookie and enjoyed it!!! Hurray! This excitement is shareable only with those who are where you are at or who have been there. I admit, I never thought that is something worth celebrating pre-anorexia.
Disconnect broadens as we celebrate the first successful meal in public, returning monthly cycle, few sizes larger clothes shopping without break downs, or first meal eaten without supervision while others celebrate first job or driver’s license. The little things that are major milestones on the eating disorder treatment scale remind us how our life became so simplified in order to survive the days, yet there was nothing simple about it.
When my daughter became more independent in her eating and our lives started to somewhat normalize, the feeling of loneliness metamorphosed into solitude that I actually enjoy. Maybe it is a part of healing, maybe I can’t get enough of silence and serenity. I also feel more connected now… to myself. I know who is my truest friend, which family member truly cares. I created my small new world, and built on the most genuine relationships to escape the complete isolation my daughter’s eating disorder tried to impose on me as well. Only in retrospect I realized that I didn’t need to bring all people in. Having a sanctuary, a safe circle of people parallel to my world who didn’t let me go down the rabbit hole after the tough lone battles, was my bridge to “round earth society.”
This is oh so very true and real. Your quite right, life caring for someone with an ED becomes so very small and simple, yet so very complicated and hard all at the same time. Too complicated sometimes to put into words but you have done it so well ! Thank you.
So TRUE <3
There is someone who understands! (Besides my therapist). I laughed at the satire; then cried when you mentioned what other families we’re celebrating. I mourn the loss of time /development we all suffered during FBT. But, I’m thankful for the outcome and hopes Ana stays away. She keeps knocking
So true but then just when you think there’s a light, reenter OCD rage, another twist into the willingness to eat and the rafts sinks with fear for self snd family.
It’s cruel and FbT is all people recommend.
One minute a hospital with a full team, next a Mom has to absorb – it takes down a village because some children resent parents deeply and it seems no way out
I sobbed reading this… it was everything I have felt throughout 10 long years of living with my daughter’s ED. You have put into words all that has been inside my head and heart. I am grateful to know there are others who understand….thank you.
It’s unbelievably helpful to read that what we’ve gone through is very real and that others “get it”. How often I have felt like I am on an island all alone struggling to survive. Thank you for this.
Thank you for sharing what so many of us feel.
You described it so well!!
Oh, you got me every time. So many emotions triggered by: going against the grain, like “flat earth” (same here), finding your child in the “mirror maze” (I cried), siblings instinctively trying to cheer up the gloom (I cried even more), the anorexia puppeteer (my arch enemy) and finally, knowing your true friends (the hindsight).
Thank you!
I am happy that the AN is now mostly behind you.
I sure resonate with the awfulness. As somebody who’s in the midst of it with no end in sight would be super-helpful hearing if/what helped you get through it without losing your mind and/or just walking out.
Hi Mary.
What helped me was a lot of work with my own mind thanks to the book Full Catastrophe Living.
Focusing only on the present day. If that was overwhelming, I broke it down, and focused on the next task only in autopilot mode. I practiced meditation whenever D was at school, sleeping or quiet, just 10 mins a day. Not dwelling on bad days. Meditation helped me calm my mind which came useful during eating times (I wasn’t 100% proficient but better than if I didn’t try at all), perspective shifting (“it could always be worse” type of thing, even when my D overdosed, or “I am lucky to be her mother – what if she was born in a family where they wouldn’t even notice she is ill” – all totally desperate narratives, I was grasping for a straw, anything). Separating the illness. Talking to other parents on FEAST forum – true life saver.
There were days I didn’t even feel like talking to a supportive friend, I had no energy. Every time I decided to throw the towel, it lasted till the next meal. If I didn’t do it who would? There was no substitute for me. I tried to put her in residential but she was denied because they thought she has enough support in me (when I was running on fumes of gas, and wished to disappear from this world). Also, long wait time here in Canada. I can absolutely relate it is the toughest thing to do, and I acknowledge each child is different.
You are stronger than you think, Mary.
I can relate to all of your comments. All.of.them.
I am also in Canada. Residential doesn’t seem to be approachable or available.
It is such a lonely journey…..where the thoughts of wanting to disappear yourself are easy to creep in. Just to escape the rodeo, circus, reality of this incomprehensible disease.
You are stronger than you think and incredibly needed in this world.