What Does Accepting Your Diagnosis Really Mean? A Personal Perspective

Seeking answers and a diagnosis proved lengthy for many, including me. I am still uncertain about my diagnosis. I have one—well, several—but they’re fluid as I await yet another appointment with another professor.

Clinicians diagnose many conditions, especially rare neurological diseases, clinically because of a lack of single diagnostic tests.

I’m struggling to understand this. However, I want to emphasise that my medical team is excellent—the best available in the UK. This makes accepting some diagnoses remarkably hard.

Which leads me to the topic of this post; what does accepting your diagnosis really mean?

A question I have pondered for several years now.

Am I doing this right?

I doubted my feelings; were they normal, correct, effective? Was I failing?

I now understand: All approaches possess merit. Everyone is different, and we all deal with things in our own unique ways.

Many find the concept of acceptance frustrating. That’s okay! I’d like to share my perspective on acceptance, and what it isn’t. You might find it more relatable than you expect.

Considering acceptance, it typically implies satisfaction.

Acceptance, but not in the usual sense

For example, if I were selling my car and someone offered me a little less than the asking price, we’d likely haggle for a bit, but we’d get to an amount I would accept because I am satisfied with the offer.

Now if we use that same analogy for our health and conditions - I get it, who in their right mind is happy to accept them? No one, right?

However, when we discuss acceptance in relation to our health, we discover a complete reversal of the concept, a point many unfortunately overlook.

Accepting our health or condition isn’t about being happy with it or liking it. It isn’t about pretending to be positive all the time and putting on fake smiles.

For me, it is more accepting that there are things in the human experience and our lives that we cannot control, no matter how much we’d want to or how badly we focus on it.

These things are unalterable. Humans are powerful beings. However, we haven't yet developed the ability to control everything through sheer willpower or focused attention.

When we become consumed by these difficult thoughts, they can overwhelm us. We might find ourselves so focused on them we lose sight of everything else - the small moments of joy in our day, the simple pleasures that usually make us smile, or the activities that spark our interest. Before we know it, we're missing out on the things that get us out of bed in the morning, the hobbies that light us up, and the experiences that make life meaningful.

Acceptance is about acknowledging these things exist in our lives; yes, they suck and would I rather they weren’t a part of our lives? Hell, yes, but they are and we can’t change that.

Food for thought

It isn’t about “thinking positively” or all about having a “positive mindset” it is about recognising that as human beings we have a mind that is capable of free thoughts. We often label these thoughts as either negative or positive, equating negative with bad and positive with good.

The meanings we then apply to these thoughts develop into our feelings. But the best thing is, we can control what we label because these are subjective and no two people are likely to label your thoughts the same.

There are certain thoughts that society agrees are negative - like those involving harm to others. Beyond these universal exceptions, your thoughts are uniquely yours. You have the power to interpret them however you choose. Better yet, I encourage you to try moving beyond labelling thoughts entirely.

For example, when I feel pain, my initial thought might be "This is terrible, I can't handle this." In the past, I'd immediately label this as negative and spiral. Now, I try to observe it simply as a thought passing through, like watching clouds move across the sky.

Why? Because the minute you label a thought, you give it power. Power to influence your feelings.

We should acknowledge our thoughts, as ignoring their presence would be impossible, draining and, simply, crazy.

ACT (Acceptance and Commitment Therapy)

Dr Russ Harris, a prominent figure in the education of ACT or Acceptance and Commitment Therapy, uses some great metaphors to highlight this in a much better way than I can articulate it. I will share a couple below.

The "Sushi Train" Metaphor

This analogy suggests that thoughts, like dishes on a sushi train, are constantly passing by, and we don't need to grab and hold on to them, especially the unpleasant ones. The goal is to observe thoughts with openness and curiosity, allowing them to come and go without getting caught up in them.

The Stage Show Metaphor

I found this much more helpful in video form opposed to in text - I hope it helps you as well.

These metaphors are great for visualising how our thoughts work and the impact they have on our lives.

ACT (Acceptance and Commitment Therapy) combines these thought awareness practices with mindfulness techniques. This approach helps us stay present while acknowledging our thoughts without getting tangled in them. Through mindful awareness, we can better recognise when we're getting caught in thought spirals and gently redirect our attention.

We don’t have to pretend to like something

As I hope I have articulated throughout this post, that accepting our diagnosis isn’t about pretending we’re happy with them or our situations. It is about trying to become more aware of our own self and learning the process of detaching from and realising that our thoughts do not have to dictate our own human experiences.

Our conditions, unless by some sort of miracle, aren’t going away. For many of us, they are incurable and, on the whole, untreatable except for treating some symptoms.

I also understand that when living with these life long conditions, that it is incredibly difficult to not let them take over everything, including our minds, thus our thoughts, feelings and then our actions and behaviour.

There will be days when we can manage this more effectively, but likewise, there will also be days when this completely goes to shit and our illnesses rule our world. The important thing is to avoid letting these tough days or weeks turn into months or years...

When we have little control over what our physical bodies do, it is vitally important that we remember we control how our thoughts impact our feelings and the rest of our lives.

Wrapping Up

Accepting a diagnosis or chronic illness is not about being happy with it or pretending everything is fine. Instead, it involves recognising that there are aspects of our lives that we cannot control, and learning to coexist with them. Acceptance is about acknowledging our thoughts and feelings without letting them dictate our experiences.

Throughout this journey, we need to remember that it's okay to have hard days and to feel overwhelmed. The goal is to cultivate an awareness of our thoughts and to practise detachment from them, allowing us to focus on the small joys and meaningful moments in life.

By shifting our perspective on acceptance, we can empower ourselves to navigate our conditions with greater resilience and grace. If you found this article helpful, please share it with others who might benefit, and share your own experiences in the comments below. Together, we can foster a supportive community that embraces the complexities of living with chronic illness.