It’s a common predicament. You’ve gathered the courage to begin the process and sit in weighted anticipation of the evaluation results, after a too thorough, not personal enough interview. You’ve met with a doctor who now tries to meet your wavering gaze with answers. Perhaps you’re eager and nervous. Or perhaps you’ve done this before, so you just want to get past this bit here to the flow of it all. What happens next?
Getting a mental health diagnosis can be a confusing experience for many. For some it’s a validating, relieving force that finally puts a name and a frame around the feelings and experience they’ve been living. For others, it can feel like an undefined box they don’t understand or know how to accept. Of course, the who and the how of this experience matters just as much as the what. Who tells you, and how they say it or explain it, matters. Let’s imagine the who and the how are aligned. What do you do then?
At the heart of it, I’d like to tell you that a diagnosis is a communication device, meant to capture a set of experiences and efficiently convey them to the next person so you’re not retelling the same story over and over. This only works if diagnoses were 100% accurate 100% of the time. If the who and the how are aligned, then let’s recognize that the what is much more than the what that’s being said outright based on the evaluation of the moment. It’s all the ways you show up every day outside the room.
There isn’t a diagnosis for the uniquely you. A better way of understanding it, then, is that diagnoses are an impression of a part of your story at a moment in time. They evolve with you and with increasing knowledge and awareness of mental health.
Unfortunately, this also means that there may not be a precise or individualized way of conveying all needs as a diagnostic code. This does not make them any less valid. Rather, it highlights a limit of the current system. Despite this, they have utility in providing directions and support.
A diagnosis, even with its limits of representation, can link up to appropriate treatment options to decrease suffering or pain. It can provide hope for despair, and validation for nameless agony and confusion. It can also provide supportive communities of like-minded individuals to share the experience along the journey.
While limited, diagnoses are helpful as they function within the current system. But as the system may change, so too may the way we communicate our understanding of each other’s needs. For now, the best and most helpful approach may be to recognize these limits, remain mindful of any apprehension you may have about the process, and be open about the possibilities and whole picture. It’s an appropriate conversation to have at regular intervals with your provider and not just at the evaluation.
Ways to discuss your diagnosis with your provider:
- Ask for clarification right at evaluation
- Your provider may break down the terms and treatment options for you, but let’s be honest, that first meeting can be a lot to process. It’s perfectly okay to ask them to slow it down, repeat information, or say it a different way. Ask for something to take home to read about it if you think that will help.
- Convey your feelings about the diagnosis
- Either at the eval, or the next session once you’ve processed the emotions, take the time to let them know how it sits with you. “I’m fine,” or “that’s okay,” might be short-changing you of the opportunity to let your provider know some vital information about how you’re handling this. Your feelings matter.
- It’s okay to disagree
- If the diagnosis feels off or not quite like what you feel is going on based on the explanation or whole picture as it’s reviewed with you, please let them know. It’s your care. You’re allowed to disagree. This can be a conversation. Share your concerns, you might be surprised what happens. This does not mean a provider will change or remove a diagnosis (varies), but it will open the door for new information and elaboration. If you don’t feel safe enough to trust your provider with a disagreement based on your treatment, then it won’t be an effective experience for you going forward.
- Revisit the diagnosis or treatment if symptoms change
- If symptoms worsen, improve, or new symptoms emerge that were not present at eval or have not been addressed, mention them with your provider. There is no wrong time to express your needs. It’s an impression, not the whole story and it’s evolving. It’s not uncommon for a diagnosis to entirely change based on new information as some impressions need long-standing evidence and some symptoms may not have been present initially. Moreover, diagnosis or not, it’s important to be able to meet your most accurate needs and discussing a change in symptoms helps that happen.
- No decision is set in stone
- If you are offered various treatment options, you are always able to revisit them later. If you do not feel ready to pursue something, take the opportunity to discuss with your supports, and with your provider. If you want to try a different route after some time, you can go back and change your mind.
Ultimately, your provider is on your team, and is trying to work within your system to best support you. At times there are language and conceptual limits, and so there remains a necessity for understanding and working within those parameters. The assigning of a diagnosis is not meant to be pejorative, judgmental, labelling, or restrictive. Rather, the intention is that it might validate and convey a piece of human experience related to mental health needs, and frame adequate support and treatment options.
