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What to Do (and Not Do) When Your Loved One Gets a Diagnosis

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Here’s the thing you must remember when your loved one gets a new diagnosis — their reaction will be complex, and you will definitely not understand everything they’re experiencing. This is especially true if they’re diagnosed with a poorly understood, chronic and/or stigmatized condition, like dysautonomia.

Before an official diagnosis, your loved one may have seemed all-consumed by their search for answers. And during that search, they probably heard things like their symptoms are “all in their head,” or “they’re too young to be that sick,” or any other number of dehumanizing and dismissive comments.

And then, they get a real diagnosis. One that makes sense. One that has been evaluated with thought. Relief! Validation! They finally have a name for their experiences. No, it was not all their head.

But, their moment of euphoria is quickly interrupted by a surge of pain, a dizzying sensation, a medication alarm or just sheer exhaustion. That’s when the thought, “What now?” begins. How do they manage this condition? What does the rest of their life look like? Loss, anger, joy, grief, empowerment and a bucket of other emotions may surface, and then plunge inward, at dizzying speeds. As your loved one struggles to process it all, how can you help? More importantly, how can you accept them for where they are in each moment?

Here are a few tips…

DO listen.

DINET conducted a survey a few years ago to learn about experiences of living with dysautonomia. Results demonstrated that the most helpful thing friends and family can do is listen. When your loved one talks, recognize they are choosing to share their most vulnerable self with you even though it’s exhausting, and even though so many people (including doctors) have rejected their experiences. This is a gift. Ask questions. Get clarification. And, please, listen openly.

DO believe your loved one.

In the same DINET survey, the second most helpful thing friends and family can do is believe. Dysautonomia and other chronic conditions can be invisible, and symptoms can change rapidly. Your loved one may be bedridden in the morning, but ready to socialize by the evening. Please never assume that the way they look, or these rapid changes in their health, mean they’re faking it. Instead, support them when they feel sick, and rejoice with them when they do get to engage in their favorite activities.

DO gently encourage your loved one to find support.

Professional support and a community of people who live with the same conditions can be essential to helping your loved one process and validate their own experiences. Just make sure you gently encourage your loved one to find resources because everyone processes differently. For example, your loved one may need time to process things alone before they are ready to share.

DO follow your loved one’s lead.

This may be as simple as asking, “What would be most helpful to you?” while recognizing that your loved one’s version of helpful may be different than your own. For example, you may want to help them find ways to modify a favorite activity so that they can still enjoy it, even with limitations, and they may feel loss when they try a different version of a beloved activity. Give them the time they need to adjust, and never push what you think is best.

DO NOT tell your loved one how they should feel.

Remember that your loved one’s adjustment process is fluid. They will feel a whole range of shifting emotions as they adapt to living with their diagnosis and, sometimes, their responses may not make sense to you. Comments that invalidate their “negative” emotions are harmful. In the DINET survey, participants reported that the most hurtful remarks people made were: 1) “You don’t look sick,” 2) “Think positive” and 3) “You should feel grateful that things aren’t worse.”

DO NOT impose your own timeline on your loved one’s adjustment.

Everyone processes change, grief and other emotions in their own way, in their own time. When your loved one seems stuck in their grief and anger, it’s natural to want to cheer them up. Please be careful on how you go about this. Encouraging excessive cheerfulness can push your loved one into a state of “toxic positivity,” in which they may appear adapted on the outside, but struggle with unprocessed and invalidated emotions internally. This can complicate their adjustment process.

DO NOT take your own frustration with the situation out on your loved one.

Dysautonomia and other chronic health conditions can impose stress on everyone involved, including you — the one who just wants to help. You will certainly get frustrated with the situation, and you have a right to feel frustration, anger and grief, too. Just please do not lash out at your loved one who may already feel like a burden. Instead, approach them with openness and vulnerability. It may even be therapeutic for you both to talk about your shared grief. You should also seek out your own sources of support, such as a trusted friend, professional help or a support group specifically for friends and family.

Most importantly, remember that your love and support is important to your loved one. Their symptoms may occupy many of their days, and it’s on those days that it’s critical to remember the love, support and appreciation you share.

A version of this article originally appeared on

Getty image via cienpies

Originally published: March 25, 2021
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