It shouldn’t have to be this hard, but you need to fight for the help you deserve.
This is Crazy Talk: An advice column for honest, unapologetic conversations about mental health with advocate Sam Dylan Finch. While he’s not a certified therapist, he has a lifetime of experience living with obsessive-compulsive disorder (OCD). He’s learned things the hard way so you (hopefully) don’t have to.
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I’ve finally accepted that I have anorexia. So I did what everyone asked me to do, and I tried to get help. But no one seems to be listening to me. It’s like they don’t care at all.
My doctor told me to talk to a psychiatrist, the psychiatrist told me to talk to a specialist, the specialist sent me back to my doctor, and now no one is returning my calls. I want to give up. Why isn’t anyone helping me?
Before I dive into any advice, can we pause and just celebrate you for a second?
You’ve accepted that you have an eating disorder, which is hard enough to do. And then you asked for help, which is a brave and important step!
I know you’re feeling discouraged — and that’s completely valid — but I want to make sure you take a moment to honor this amazing work you’re doing.
I wish I could say I’m surprised by what you’re dealing with, but to be honest, I’m not. When I was first diagnosed with an eating disorder, I had a similarly demoralizing experience.
Every time I tried to leave a message, I was met with a full voicemail inbox. Every time I tried to ask questions, I was transferred to a different office that wasn’t any more informed than the last.
The bureaucratic maze was so frustrating, and because I wasn’t eating, I was already pretty hangry, so… needless to say, it wasn’t a pleasant experience.
I know this isn’t easy to hear — and believe me, if I could fix this for you myself, I would — but I need you to dig deep, OK?
Eating disorders are one of the deadliest kinds of mental illnesses there are, and I mean that literally. I say this not to scare you, but to affirm that this is a serious situation. It’s absolutely crucial that you keep nagging your providers until you get the help you need.
But I’m not going to tell you “just keep trying” and then hang you out to dry, OK? Let’s talk through some steps you can take to make this as manageable as possible.
I came up with an acronym for this — HUNGRY — to give you a little structure as you draft that script:
- H: History. You’ll want a quick overview that includes your history with disordered eating and what steps you’ve taken so far to get help.
- U: Urgency. Include a statement that emphasizes the seriousness of the situation. I often recommend that people “exaggerate,” because most of us tend to downplay our struggles to begin with. An exaggeration for you is probably a more accurate representation of what’s happening.
- N: Needs. What do you need from the person you’re speaking with? Come up with three immediate action items.
- G: Give credit. Acknowledge that the person you’re speaking with is a human being, presumably doing their best to help you. This can go a long way.
- R: Repeat. Circle back to the urgency and concern, to make sure it isn’t missed.
- Y: Yield. Close out by asking the person what steps are next, and then yield the floor. Give them space to absorb what you’ve said and come up with a game plan!
Here’s an example of a HUNGRY statement in action:
Hi there [NAME]. I’m hoping you can help me with something today.
I believe I have anorexia, but so far, no one has been able to help me. I’ve been restricting on and off for [TIME PERIOD], and my health is declining. I’ve noticed [SYMPTOMS: heart palpitations? lightheadedness? fatigue?]. I know anorexia is a serious and life-threatening illness, but none of my clinicians are moving quickly on this. Both myself and my loved ones are very concerned.
Right now, I need three things: A full blood panel to determine if I’m malnourished, an EKG to make sure my heart is OK, and a referral to an eating disorder specialist or clinic to get some support.
I know you might not be able to help, but maybe you can connect me with someone who can? My support team believes I need to see a specialist as soon as possible. Is there something we can do to speed this process along?
If it’s possible, take a half day or leave work early to ensure you have the space and time you need to make these calls. Eating disorders can become medical emergencies very quickly (assuming it isn’t one already), and it’s the kind of health concern that warrants stepping away from work, so don’t feel bad for taking the time.
Create a soothing environment around you
Wrap yourself in a soft blanket, light a candle, keep some trail mix handy, have an item to fidget with, and have a glass of water nearby, too. Whatever makes you comfortable, keep it around!
Then, consider the logistical stuff you’ll need
A notepad and pen, your medical record number, the names of providers you’ve spoken with, and anything else someone might ask for. And that script you wrote earlier? Have that in front of you, too.
Finally, get into the right headspace
If a friend were in this position, what would you tell them to pump them up before a call like this?
Probably something like “Raise hell and fight for what you deserve.” Today, you’re that friend. Remember that you have the right to advocate for yourself, and you need not make apologies for doing whatever it takes to protect your health.
Who do you call? Everyone’s care team looks a little different, but these are the steps I took when I first reached out for help. You can decide which ones are applicable to your particular situation:
- General practitioner. I messaged my usual doc online to see how she could support me. I’ve heard GPs described as the “coach” of your care team, so if they aren’t blowing the whistle and getting people moving, you might want to consider a different GP altogether.
- Psychiatrist or psychiatry department. I already had a psychiatrist, so I tried to get in touch with mine. When he wasn’t available, I also called the psychiatry department and asked to speak with a manager to speed things along.
- Eating disorder clinic or nutritionist. Some providers have specific clinics or providers for ED patients. They usually require a referral from your GP, but you may be able to connect with them over the phone. A Google search can help you track some of these folks down!
- Therapist. If you have a therapist or psychologist as part of your care team, they might be able to provide you with some guidance or referrals.
So you’ve called everyone you can think of, and it’s still not working. I’ve been there, too. Don’t give up just yet.
There are still a few things you can do:
- File a grievance. Most healthcare providers give you the ability to file a complaint, and many of those systems are easily accessible online. Now, not only are you nagging your team, a case manager is responsible for nagging them, too. Your grievance can be just like your script, except with the addition of noting what steps you’ve already taken in your care.
- Connect with an outside provider. If you can afford it, there are nutritionists who you can pay out of pocket. I found a dietician who specializes in Health at Every Size, and we have video sessions weekly. Many offer a sliding scale and are available much sooner than a nutritionist who you might find through your insurance provider (and many will work with the rest of your care team when they get their act together!).
- Look for community resources. Track down some local resources, like support groups and recovery programs, through trustworthy organizations like the National Eating Disorder Association (NEDA).
- Show up in person. Make an appointment with your GP, or if the psychiatry department you’re affiliated with has a crisis walk-in clinic, don’t be afraid to show up and utilize those services.
When you already feel like you’re drowning, it can be downright painful to see clinicians passing the buck instead of stepping up. I won’t pretend it doesn’t hurt or isn’t exhausting.
It does hurt. It is exhausting.
But you deserve that help. And frankly? You need it. Eating disorders are sneaky, deceptive, and dangerous, even if it doesn’t totally feel that way.
When it comes to mental health, it’s better to overreact to a potential crisis than not — especially because early intervention is such an important factor in determining how quickly we recover.
So my advice? Be as pushy, firm, and insistent as you need to be.
And remember, you don’t need to apologize for advocating for your health. If you were drowning, the last thing you’d be worried about is your tone of voice or how many messages you left on someone’s phone.
Trust me, if you’re worried about being “too mean,” you probably aren’t going to be. People who are rude to folks in customer service usually aren’t concerned about it to begin with. The fact you are means you’re unlikely to be that person!
I know you might be scared (I was terrified), but here’s what I can say for certain about any kind of mental health recovery: It’s the bravest, fiercest fight you’ll ever take on, and it’s worth every ounce of effort and energy you put into it.
Speaking from experience, there’s a very good chance there’s a happier, healthier you in the future who’s going to be so freaking glad you didn’t give up.
And until then? I’m here rooting for you. We both know you deserve better — so don’t let anybody slow you down. Your life is worth fighting for.
Sam Dylan Finch is a leading advocate in LGBTQ+ mental health, having gained international recognition for his blog, Let’s Queer Things Up!, which first went viral in 2014. As a journalist and media strategist, Sam has published extensively on topics like mental health, transgender identity, disability, politics and law, and much more. Bringing his combined expertise in public health and digital media, Sam currently works as social editor at Healthline.