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  • Writer's picturePetra

Grieving May Be an Important Process in Coming to Terms With an ADHD Diagnosis

When an adult receives a diagnosis of ADHD, or when a parent learns that their child has ADHD, it can trigger a profound emotional journey that for some people can feel like things have gotten worse, rather than better, and which can take months to come to grips with. This journey often mirrors the grieving process.


This blog explores the concept of grief following an ADHD diagnosis, drawing on the framework originally proposed by Elisabeth Kübler-Ross, while recognising the modern interpretation of these stages as flexible phases that people may experience non-linearly, in a pattern unique to each individual.


The Phases of Grief in the Context of ADHD

Denial

Initially, there may be a phase of denial. For adults diagnosed with ADHD, denial often stems from disbelief, especially if they have lived without a diagnosis for many years. "How could this be me?" is a question some might ask. This phase can serve as a temporary shield, giving the individual time to adjust to the reality of the diagnosis. I have seen clients whose imposter syndrome kicks in strongly during or after an assessment. They may think "have I tricked the psychologist?" or "I made all that up". For me, I see how this imposter response might come under the banner of denial.


Anger

Anger might be directed towards oneself, loved ones, or health professionals. It can be rooted in a sense of injustice or frustration about past struggles that now seem could have been managed differently if the diagnosis had been made earlier. "Why didn't I find out sooner?". Some clients have told me about anger toward parents, including if they were diagnosed as children and no treatment was provided, or was discontinued early. I have had clients express anger toward counsellors, GPs, psychiatrists, psychologists, and other health professionals for the ways that previous enquiries about ADHD have been minimised or rejected, sometimes accompanied with comments that highlight the clinician's lack of understanding about ADHD: "You can't have ADHD, you finished university", "even if you do, you've gone this far without treatment, do you really need it?".


Bargaining

Bargaining may involve a mental negotiation process. "If I try harder I can improve this on my own," or "There might be some thing out there that can fix this," might be thoughts that occur. This stage reflects a struggle to regain control or to find solutions that might mitigate the impact of the diagnosis. When my son was first diagnosed I thought that medication would effectively make him "normal" and life would get much easier. This is very much not how it has turned out (and thankfully four years later I am much better informed on the merits and limitations of medication and behavioural treatments).


Depression

Acknowledging the full impact of ADHD can lead to feelings of sadness or depression. This phase is often a response to the realisation of how much struggle and misunderstanding has pervaded one’s life. It's a time when the emotional weight of the diagnosis sinks in, and individuals might mourn the lost potential or the difficulties faced in the past. I have had clients tell me that they have felt worse since diagnosis, rather than better as they expected, which is very disheartening. This is usually when I start talking about the grieving process.


Acceptance

Acceptance does not mean being happy about the diagnosis. Rather, it involves recognising ADHD as an ongoing part of one's life that can be managed and accommodated but cannot be erased. Acceptance is characterised by a readiness to explore treatments and strategies to improve daily functioning and well-being. It is a sign of embracing support and moving forward. It is noticing problems and being easier on oneself, which can allow for often long-standing problems with self-esteem and confidence to begin to shift.


The Role of Support

Support from family, friends, and professionals can be very important. Therapy, particularly with a focus on ADHD, and from a neurodiversity-affirming standpoint can provide a space to process these emotions and develop strategies to cope with new challenges. Support groups, including online forums, can also be a valuable resource, providing empathy and shared experiences from others who understand the emotional terrain of living with ADHD.


I've had a few clients who have said that being with other neurodivergent adults means they can drop their mask, reduce their vigilance to the reaction of others, and be free to be a bit quirky or loud without having to explain themselves, or fear rejection so intensely.


As a parent of two neurodivergent children, I feel comfortable in groups with parents and children whom are neurodivergent themselves. In these groups it is more acceptable to talk about difficult experiences or behaviours without fear that the other adult is thinking that I am complaining a lot, and that my child sounds like they're out of control and I am clearly doing a bad job as a parent. It's also great to see my children interacting with other neurodivergent kids, and feeling grateful that they can have friends who accept them for their quirky selves, even if there is the occasional meltdown or oppositional behaviour.


The Importance of Grieving for Effective Engagement in ADHD Treatment

Not engaging with the grieving process after an ADHD diagnosis can have significant implications for treatment and management of the condition. When individuals bypass or suppress their grief, or perhaps get stuck in the denial phase, they might also avoid fully acknowledging the reality and implications of their diagnosis. This denial or avoidance can manifest as reluctance or resistance to engaging with treatments and interventions that are crucial for managing ADHD effectively.


Implications of Not Grieving:

  • Lack of Acknowledgement: Without acknowledging the diagnosis, an individual may fail to see the importance of adhering to treatment plans, whether they involve medication, behavioural strategies, or therapy. This lack of acknowledgement can lead to inconsistent engagement with these treatments, reducing their effectiveness.

  • Resistance to Acceptance: By not processing the emotional impact of the diagnosis, individuals might remain stuck in a state of denial or anger, which can manifest as resistance towards healthcare providers and their recommendations. This resistance can be a barrier to forming a collaborative, trusting relationship with therapists and medical professionals, which can be so important for successful treatment.

  • Unaddressed Emotional Needs: Grieving allows individuals to work through complex feelings associated with ADHD, including past regrets or frustrations. Without this emotional processing, unresolved feelings can lead to increased stress or anxiety, which might complicate the management of ADHD symptoms and exacerbate mental health difficulties.


I have a number of clients I have seen for a few years post diagnosis, and I have been able to see the shift in them from experiencing a lot of difficulties, to being diagnosed, getting their meds optimised with the help of their prescriber, learning more about ADHD, noticing it in their children and being empathic, supportive, and looking for assessments for them, beginning to be able to talk to people about it, and becoming a source of information and support for others. They are breaking the often inter-generational pattern of untreated ADHD.


Encouraging Engagement with Grief:

For healthcare providers, recognising signs of unaddressed grief in neurodivergent clients is important. Strategies to encourage engagement with the grieving process might include:


  • Therapeutic Support: Expecting that grief and adjustment issues are likely to occur means we can encourage clients to express their thoughts and feelings about the diagnosis. Therapy can facilitate movement through the phases of grief at a pace that respects the individual’s emotional state.

  • Education: Providing comprehensive information about ADHD can help demystify the condition and reduce feelings of anger or denial. Understanding ADHD’s implications and the effectiveness of various treatments can motivate individuals to engage with their treatment plans.

  • Peer Support: Encouraging "finding your people" whether in real life settings, or in online groups can allow a safe and supportive place to listen to others and express thoughts and feelings about living with ADHD, as well as hearing about what others have found helpful.


Conclusion:

Engaging in the grieving process is not just about coming to terms with a diagnosis; it's also about preparing oneself to actively participate in the treatment. Acknowledging and addressing these emotional phases can lead to more effective engagement with ADHD management strategies, ultimately fostering better outcomes. By supporting individuals through grief if and when it arises, healthcare providers can help pave the way for a more accepting and proactive approach to living with ADHD.






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