Perspectives of a Canadian Advocate: What I Want People to Know

By Lisa Burns, FEAST Volunteer and Canadian Parent Advocate

On any given day I speak to at least 2 families with adolescents in Canada waging a war on an illness that is largely misunderstood by, well, everyone; with the exception of those of us who’ve been there! 

I virtually hold a caregiver’s hand in situations where they should not need to rely on the support of a person they’ve never met, a person whose voice in real life they’ve never heard, and the hugs in real life I can’t give them. Fortunately, they can feel those hugs through the air waves! 

I remembered recently a statement that Dr. Blake Woodside (Psychiatry Toronto General Hospital Eating Disorder Program) said to a group of caregivers way back in 2011. He said, “If men’s prostate health concerns were handled in the same way that eating disorder care is, men would be RIOTING in the streets!” And he’s not wrong! Affected populations affect change. 

Is rioting in the streets what those of us affected by eating disorders need to do? Perhaps. Although I personally would not relish the idea of parading my un-well loved one in the streets. Would you want to do that? Likely not. So, what can be done? What can individuals do to support those of us who need it? 

Parents and caregivers need support as they work towards recovery for their children, spouses, partners, and relatives, in their homes. I say ‘homes’ because for the vast majority of Canadians and others worldwide, HOME is where treatment is happening. We do not have years to sit on wait lists for help. We cannot continue to exhaust ourselves providing care AND trying to find help!!! 

In Canada, the amount of affected individuals vastly outnumbers available public and private treatment options, even when carers have the financial ability to cover those costs. 

Here’s the thing: parents can be trusted. We know this illness to the very core of our beings. We’ve done the reading and research. We KNOW what we need from those around us, please listen when we say it! Food is medicine for our loved ones, and we need all of the help that we can get to make sure that adequate nutrition is achieved meal after meal, day after day.

Here are several suggestions of ways people outside our homes CAN help. 

Nurses and Diagnostic Technicians: You are usually the first person we see and you may see us at our worst! Stress, fear, insomnia, anxiety and did I mention FEAR, is what you will feel and see when we show up in front of you. Please remind yourself that as a caregiver, we KNOW what we are up against; and while we may be terrified, at the same time we are also beyond committed to obtaining what our loved one needs. Working with us, trusting that weighing our child backwards on the scale is (yes, in fact,) exactly what we’ve just asked you to do, while also asking you to make no mention of weight, looks, fashion, and most of all “ob*sity.” 

GP’s/Primary Care Physicians: Please document our loved one’s eating disorder and the difficulty that we are encountering in getting them to eat in their chart, and follow through with the hospital where you have privileges. When you do this, the good folks in the ER will have this vital background information when they see us show up unexpectedly with our loved one and a plate of food. 

Hospital Staff: Know that parents and caregivers use the ER as a desperate measure, when there is no recourse at home to get their loved one to eat, and that it is indeed an emergency situation. Food is medicine, and if we can’t get our loved ones to eat, then they are being deprived of the medicine that will sustain their bodies and their lives may be in danger. 

These parents and caregivers need you on their side. Let the affected person know that you will need to intervene with an NG tube meal before they can go home. This will often result in our loved one agreeing to eat food, the real medicine, on offer.

Bringing our loved ones to the ER is a tool in our toolbox; it’s what we use when none of the other tools are doing their job and when we need to mitigate our loved one’s medicine (food) refusal or to keep them safe. We NEED you to recognize what we are doing and to support us! 

Learning Institutions: Caregivers will be seen ‘lunching/snacking with their child’ in a parked car. More often than not, we will have notified you that this is what we need to do to ensure our child recovers from this illness. For some of us, this is a well working action and we are perfectly content to eat with our child in the car. For others, however, this may not be possible. Not all caregivers have cars to eat in. Please offer us a place of sanctuary where we can ensure our child is able to receive their medicine in a safe, trusted environment. If you have questions or are curious about the treatment we are providing, ask us, not our loved one. Eating disorders are extremely complex, and should not be discussed directly with the affected person. We understand that you are well intention-ed; have that conversation with us, not with our child, please.

Friends/Family/Community: If we’ve mentioned that our loved one needs us 24/7 right now, we aren’t exaggerating, and there are any number of things we will not get to over the course of several months and possibly years depending on the age of our child and how much time it takes to help them turn the corner to recovery. You may be just as terrified as we are, albeit for different reasons. Here are some things that you should know: 

No, this illness is not contagious!

Yes, it’s OK to pop over as long as you ask first!

We may miss gatherings for a while. Please keep sending us your love, we need it! And no, you didn’t do anything wrong!

Your text asking ‘how are things going’ may not ever get answered…at times, we have no words.

We could definitely use your help! If you have an hour and can take what may feel like basic instructions and then give us a little respite or rolled up sleeves in the foray…YAY!!!

Yes, we need toilet paper, paper towels, coffee, milk, CAKE, etc., and just grabbing it while you’re out and dropping on our doorstep could quite literally be a LIFE SAVING gesture! I promise, we will reimburse you when our heads and our hearts aren’t about to explode! 

Highly Trained, Well Educated Eating Disorder Treatment Professionals: The dream is there will be more of you! We cannot do this alone. We need your help to work WITH us. We lay our hearts in your hands, quite literally. Many of you are the reason caregivers are properly educated, and for that we have endless gratitude!

Please understand that when we hesitate to run with your advice, it is in all likelihood because we really do know our children best. We really do understand what needs to happen, and knowing our child may mean we need to tweak the ‘expertise’ you are providing for us. We are not being obstinate or deliberately challenging. We are formulating what will be the best path forward for our child and our family. Our child living, fully and well, is the end game; let’s get there together!