The Mental Load of a New Diagnosis

If you’re reading this post, it’s likely that you have a friend or family member who’s recently been diagnosed with an illness. They want you to understand what they are going through right now. They may also want you to know how you can better support them during this time.

The truth is, some of the things that we say – even with the best intentions- can make the life of a person with a new illness much harder.

When all I could do was lay in bed medicated and in pain, life was dark. But it was also simple.

When I started to recover, and finally started to be able to go out for one hour a week, life became exponentially more complicated.

In fact, the 6 months of CBT I underwent following my diagnosis was mostly about how to deal with other people’s reactions to my condition.

When all you have energy for is one hour out a week, dealing with being misunderstood seriously tips the cost/benefits of going out into “not worth it” territory. It’s tempting to just avoid everyone and save the energy drain from conflict.

But then you’re back in that small, dark place again. And I know you don’t want that for your friend.

The Mental Load of Illness

You may have heard of the “mental load of motherhood” comic that’s been floating around in various forms.

Here’s how that “mental load” is defined by one study, published in the American Sociological Review 

[the responsibility of] “anticipating needs, identifying options for filling them, making decisions, and monitoring progress.”

The Cognitive Dimension of Household Labor
Allison Daminger,

This is exactly the same process of managing a chronic illness.

But without an adorable mini-me.

Without 9 months of preparation.

The earth simply opens up one day and you are hurled head first into the overwhelm and anxiety of a new parent learning it all from the minute the Dr tells you the name of your condition.

Some of the things on the mind of a newly diagnosed person

  • Learning about their illness
  • Looking at various treatment options – traditional, experimental and alternative
  • Deciding which of the above to persue in which order.
  • Worrying that this illness can be associated with other illnesses down the line
  • Worrying that maybe the diagnosis isn’t right and a more serious illness is at play
  • wanting a second opinion, but needing to not delay treatment and not having enough energy to follow both
  • Needing physical scans or separate tests that need a series of hospital appointments
  • Needing to start physiotherapy
  • Needing to start therapy to come to terms with the illness (this is literally the only course of “treatment” recommended for several illnesses in the UK, btw!) or to start CBT for behaviour modifications that can help ameliorate the condition.
  • Learning to cook everything from scratch if there is a significant amount of dietary restrictions, meal planning and having a list of things you can’t eat ready to share with people who invite you over like they usually do.
  • Sheer utter overwhelm at all of the above, combined with crashingly low energy. Energy so low that even deciding what to eat, even if dinner was a straightforward choice of order out, is too much.
  • Health anxiety about the future. This can mean having sudden panic attacks or anxiety attacks where previously there was no history of them, just worrying about their future.
  • If there was a medical crisis involved before (or after) diagnosis, there could be PTSD from the incident.
  • Having your image of yourself shattered and wresting with your identity. Mourning for the loss of the life you expected to have ahead of you and trying to piece together a new life with uncertain information.
  • Keeping track of symptoms to share with professionals
  • Keeping lists of questions for their different doctors and coordinating information between them
  • Googling what to buy to help them with mobility, meal prep/ pain management
  • Anxieties about money, especially for people in the states (we have social healthcare in Europe and so far are not yet communists, but whatever. You do you, USA)
  • Anxieties about earning, asking for time off from work, taking too many sick days, how this will affect your career progression.
  • Anxieties about if their partner will stay with them (if they have one). Or how this will impact their dating / have kids.
  • Worrying about being a burden to your family
  • Worrying your friends won’t keep in touch if you can’t keep your life the same.

Your friend is more exhausted and overburdened than you realise.

And the reason you don’t know this? It’s partially because of how people react to the truth.

What Not to say to a Newly Diagnosed Person

What made it harder was knowing they meant well. Knowing that everything they said was because they couldn’t bear the thought of my suffering, ironically.

Here are a generalised groupings of things people say and how they negatively affect someone with a chronic illness.

1. Could this happen to me?

No one actually says this, but the questions they ask point to them wondering if this could happen to them. What were they symptoms? Is it genetic? What factors contribute? How is your life impacted?

It’s all in the tone, and if we know you are self diagnosing and freaking out, what happens is we often feel compelled to downplay how bad it is. To stop you freaking.

And the reason this is bad for us:

1. We’re betraying our reality for your comfort. When people can’t be their whole, authentic selves, it impacts their mental health.

2. We can’t get full support or accommodations we need around you without revealing we lied or downplayed our situation. So we’re trapped.

2. “Did your [lifestyle/diet] contribute to this?“

We are literally combing through every aspect our lives looking for causes and blaming ourselves. That is part of grieving process.

And because our neoliberal society is defacto ablest and implies that some disabilities are “not real” or are ‘deserved’ through bad lifestyle choices, we don’t need you suggesting new ways we “deserve” our disability, thank you.

3. “Have you tried this diet/alternative treatment/ exercise?“

My main problem with this is that most of these things are tried before diagnosis. And since proponents of these practices swear by their efficacy if you “give them time”, they have the effect of delaying proper medical care. Not every condition can afford to have that delay.

For people already diagnosed, they often give false hope, only to feel disappointed and foolish at the end. For someone who’s already suffered and gone through so much, this is cruel.

I’ve broken down sobbing when the raw vegan diet that so many people swore reset their system didn’t have that effect on me. It was one of so many such diets and supplement “campaigns” I had tried. So much money and energy wasted.

4. “Have you seen this research that says..?“

Let’s review that list of things on your friend’s mind again, shall we? Assuming they haven’t already seen that paper, would you want yet more to deal with? Because I promise you, you’re not even the firth or sixth person sending them links.

Ask if it’s ok to send a link to their email if they have mental capacity.

And be aware they might need a break from reading and trying to find solutions. Weeks or even months long breaks. Burnout from managing health conditions is a real thing.

5. “Oh that’s not so bad, my (mom/friend/boss) has that.“

Do you know it’s sometimes easier for people to not tell friends and family what their condition is simply because this response is so common and so draining? Don’t assume you know more than the person with the condition about how their condition affects them.

Let’s break down the harm..

1. Please re-read the first point in this list and consider that that person you think of a template for the illness may not be sharing the whole picture with you for the reasons listed, or for cultural or generational reasons.

Your response to your friend has the effect of forcing them to stay silent about how their condition really affects them to not appear to conflict with your mom/friend/coworkers story, or push back with you. And we just don’t have energy to do this over and over again.

2. No two people with a diagnosis have the same experience or same symptoms. So what’s a teeny issue for one person may not be the same for someone else.

Also.. Different support systems, different jobs and job security, different healthcare access or healthcare coverage all influence how much emotional stress we are experiencing.

There’s also different resilience factors, which can be different even within the same family based on how individuals gets support or don’t get support. Eg, from people like you. As well as from things like dna being correlated for propensity to anxiety disorders and depression.

Our response to stress in times of change varies individually even when environment and culture, lifestyle and mindset are controlled for. It’s not fair to compare apples and oranges.

In the end, the best thing you can do for your friend is practice active listening, and just let them tell you what they need. Ask them how they really are, and just listen and empathise. Don’t try and fix.

If you really want do something for them, ask them if they’re anything you can take off their hands in terms of errands. Ask them what they would need to be able to come to your next social event, maybe push the date back so they have longer to plan for it? Change the event type or location? Offer to zoom call them if they can’t make physical events.

Let them feel you want them to be be part of your life even if they’re busy and tired and they’re not as much “fun” as they used to be for now.

They’ll truly appreciate it.

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