Your diagnosis has just come down like a judge’s gavel on the bench. You feel an uncomfortable mix of contradictory emotions: relief, anger, sadness, bitterness… How do you navigate your new post-diagnosis reality? And what value does this diagnosis really have?
Table of Contents
The Shock of Diagnosis
It’s normal to feel very strong emotions following a diagnosis, and it sometimes takes time before you’re able to process this new information. Often, after the initial shock, the first thing you feel is relief – especially if the diagnosis was a long time coming.
But then other, much less pleasant emotions can follow: anger, sadness, bitterness – even fear, particularly if it involves an incurable condition like psychosis.
There’s also a finality to it, a chapter closing: you’re no longer searching, you know. Maybe you’d suspected it for a long time, but now it’s official. And that makes all the difference.
These emotions are normal and healthy. You have every right to be sad or angry, or to be afraid of an uncertain future, of this new reality that changes everything. Don’t carry this burden alone, without support. Many therapists can guide you through this – don’t hesitate to reach out to them.
Redefining Your Identity: Who Am I Now?
Certain diagnoses can completely change our perception of ourselves. Are we still the same person? What future is possible now? In addition to reconsidering our present and future, we might also tend to see our life history differently. Our self-perception changes, and that’s not easy.
Some people will simply want to avoid the question entirely, pretend nothing changes, while they process the information in the background. Others, on the contrary, will think about nothing else, join every support group, and make it almost their entire identity. This is normal – it takes time to cope. Maybe the key is simply accepting that this diagnosis is part of your identity, without completely overshadowing it. A part of you, more or less significant, but not everything. You are more than your diagnosis.
This information also involves socio-professional considerations, since mental disorders are still heavily stigmatized in society. It’s often wiser to remain discreet. This stigmatization can also be deeply internalized, and it can be terribly difficult to accept that you have a mental disorder, or any other diagnosis for that matter. Beyond our perception of ourselves, there’s our perception of our worth as human beings deserving of love and respect that can take a serious hit.
Yet a diagnosis is just a label, even if it represents a psychological reality and implies more or less long-term treatment. You are you, you are more than this piece of paper, than your symptoms and your care. And you deserve to be loved, to be respected, and to have a future.
Having support can really provide relief and help make sense of all this. With time, this diagnosis can become simply one piece of information among others about who you are – important information, but information that doesn’t define you. In the end, you decide your new identity.
The Grief of Late Diagnosis
A very common feeling is grief in the face of a diagnosis that comes late, perhaps much too late, after years of medical wandering, suffering, and treatment errors.
This grief is often accompanied by completely legitimate anger and bitterness at the injustice of all that lost time, money, and energy, those missed opportunities, and perhaps even a profoundly altered life path. It’s normal to feel all of this – you have been wronged. The only way to get through these emotions is to experience them fully and let time do its work, ideally with compassionate professional support. This is legitimate grief – grief for the person you could have been, for the life you could have had with the right diagnosis and the help you needed from the start.
The Impact on Loved Ones
A diagnosis doesn’t just affect you – it also impacts your loved ones. And unfortunately, their reactions aren’t always what you might have hoped for. The reality is that your loved ones will also have to weather their own emotional storms in the face of this new reality.
We can observe phenomena of denial, often linked to guilt about perhaps having minimized your suffering before, or simply fear of the unknown. They question the diagnosis, try to dissuade you from following treatment… These are normal reactions but no less painful. Your loved ones are grieving, especially if your diagnosis involves lifelong care. Additionally, some mental disorders are hereditary, which can be very frightening if there are children… or revealing. You suddenly remember the aunt or grandmother no one ever talks about but who strangely had similar symptoms, which can add another layer of guilt and toxic reactions.
It’s already difficult to manage yourself. It’s not your responsibility to manage others. Be understanding, but prioritize yourself.
Finding Your Community Without Isolating
Faced with loved ones who may struggle to understand, you might turn to online communities of people with the same diagnosis. There are many benefits, because beyond feeling understood, members can be very active and there’s real sharing of information, advice, recent studies… in short: it gives you hope. You’re no longer alone, you have a future! Participating in the community can also give life meaning again, if you felt like you’d lost it.
But don’t isolate yourself from your friends or family: they’re not “other,” they simply don’t have your diagnosis. Offer them the opportunity to be included in your new community, in your new identity: they might surprise you. And try to be tolerant if they’re not particularly interested. You are more than your diagnosis, and you can’t necessarily share everything with everyone. Look for what unites you, not what separates you.
What If It’s Not the Right Diagnosis?
Sometimes what you feel facing your diagnosis isn’t relief, but rather frustration. You thought you finally had answers, but something’s off. The treatment isn’t working, or your symptoms don’t really match what you’ve been told. You feel like you haven’t been heard, especially if you’re a woman or a marginalized person.
The reality is that diagnostic errors are common, with studies showing error rates ranging from 30 to 90% depending on the disorder and context! Between cultural biases, gender biases, symptom complexity, and professionals’ lack of time, the first diagnosis is often not the right one.
A diagnosis is not a prophetic revelation. You have the right to question it. However, be attentive to your feelings. If you find yourself “diagnosis shopping,” you might simply be in denial.
How to Navigate the Medical System
Some diagnoses are harder to obtain than others, and it’s common to lose confidence in the medical system, or even to be deeply disgusted or traumatized by it. How do you continue receiving care when the patient-doctor trust relationship has been destroyed?
If you’ve experienced medical violence and developed a phobia because of it, you’re not alone. Iatrophobia (fear of doctors) affects about 3% of the population, and mistrust of the medical system is increasingly documented. Having professional support to overcome this can help, but doesn’t change the objective reality of medical mistreatment, healthcare providers’ lack of empathy, and doctors’ well-known oversized egos.
It’s important to be an actor in your illness, to be responsible for yourself, and to have done the necessary work on yourself to be able to face and dare to say no to a person in a position of authority. A doctor is a human being. They make mistakes. And they have a legal obligation to respect you.
The Right to Choose
You have the right to refuse any medical treatment, whatever it is, even if your doctor disagrees. The doctor doesn’t have the right to refuse to treat you; at most, after having their little tantrum, they must redirect you to someone else. Demand respect: you’re sick, you are not a piece of shit.
You also have the right to be fully informed before making any decision – about side effects, alternatives, and risks. And the doctor must not try to impose anything on you, threaten you, or intimidate you, because that’s called medical coercion, and it’s illegal. The doctor must respect their patient’s free and informed consent.
Just as you have the right to say no to treatment, you also have the right to accept it, regardless of what your loved ones think. Often, the idea of side effects and prejudices we might have about these treatments deeply worry the family, who are afraid of losing you, of losing the person they know and love. And in some toxic situations, they may be afraid of losing the control they have over you. Try to remember that you have the right to treat yourself because you’re the one living with your symptoms and suffering, not others.
And finally, you also have the right to be wrong. Maybe taking the treatment was the right thing to do. Or on the contrary, the side effects were unbearable and your family was right. You have the right to change treatments, stop them, or initially refuse and then accept them later. You can also give yourself time to think. This isn’t a lobotomy. Treatment can be stopped at any time, even if you sometimes need medical guidance to avoid severe withdrawal effects. Give yourself the right to make mistakes, and relax.
Conclusion
Your diagnosis is just information, not a condemnation: you’re not branded with a hot iron. Your doctor can guide you, but they don’t live your life: you’re responsible for your life and your treatment. So it’s time to become your own expert and stop waiting for someone to tell you what to do. You are much more than your diagnosis, so don’t be afraid of it and above all, don’t let it define you!