AMAA: Coping with a Diagnosis

Do you have suggestions for how to self-care/take time away from thinking about the diagnosis?

Self-care is so very important, and if you need practical ideas for what to do for self-care there are a few options around here. Sometimes though, even if you have a bunch of ideas for self-care, it’s either hard to convince yourself to do them, or worries sneak into your self-care time and distract you.

It can take time and practice to treat a time out as something which is okay to have. Strategies like mindfulness can help with this as with practice they can help people focus on the present moment. Most people find it takes some time, and gentle consistent practice to really get the hang of it. 

If you’re spending a lot of time thinking about your diagnosis, and are finding that these thoughts are getting in the way of other things, then sometimes it can help to actually set aside some time to think through what your concerns are and how best to address them.

This can actually make it easier to take time-outs from thinking about it, because instead of telling yourself not to think about something, you’re just saying “I will think about this later.”

Writing out your worries can help clarify them and help you work out how to address them. Some examples of things which could help address these worries are learning more about your diagnosis, thought challenging (https://au.reachout.com/articles/how-to-challenge-negative-thoughts), and talking to others (whether this is professionals, friends or peers). 

It can also be helpful to make sure you have other things in your life to focus on, which can draw your attention away from a diagnosis. If you look for things you are passionate about or which you find meaningful as part of your self-care, this can really help.

What can I do to deal with the nerves waiting to get an appointment and diagnosis?

Waiting for an appointment can be difficult, and unfortunately at the moment is also really common. 

It’s important to know that while a diagnosis is helpful to clarify what is happening and guide next steps, you don’t need to wait for a diagnosis to start working out what strategies are helpful for you. 

There are a number of self help strategies that can be useful while you wait. Here’s a good place to start with some strategies, and I know that there are a lot of threads on these forums where people have suggested what has worked for them.

Trying different strategies, and keeping a list of what you liked and what you didn’t can help with the wait because it gives you something active you can do to look after yourself and helps you learn skills. 

If there is a diagnosis you have in mind (but you’re waiting for confirmation), then reading about things that people with this diagnosis find helpful and trying those things can give you a headstart (this can be helpful even if you end up with a different diagnosis, because lots of strategies work for more than one diagnosis).

If you’re not sure what diagnosis fits you, then general strategies like self-care are a good place to start, or you can focus on what behaviour you are noticing, rather than diagnosis (for instance, if it’s hard to get things done, resources which look at motivation may help).

How can you get support from your school/university once you have a diagnosis?

It’s great to know that you are thinking about how to access support.

There may be a range of support available, from counselling which can help manage stress associated with school/uni, to accommodations if your condition is impacting the way you engage with school.

The first step would be talking to someone at the school or university about what services and supports are available for students. The title of the right person to talk to is going to vary depending on where you are (including between different unis), but if you go to your school or university’s website and search for ‘student support’ you can usually find out more information. 

The school may need documentation to support your request, such as a letter from your health professional. Requirements can vary so it’s best to talk to your school first as they can tell you what supporting documentation you need, as well as what the process is. 

It’s usually more important for your school/uni to know how your diagnosis affects your learning or what type of support or accommodation you might need, rather than focusing on the specific diagnosis, as not everyone with the same diagnosis needs the same support.

How do you deal with the worry that your diagnosis could be wrong?

When it comes to worry, it can be useful to take a moment and work out if there is anything in particular that is causing the worry, or if it is the type of persistent worry that sticks around.

It might be the first type if there is something about your diagnosis that isn’t sitting right with you - if it doesn’t feel like the diagnosis describes your symptoms or experiences well, or if the person who diagnosed you didn’t really explain the diagnosis or why they think it applies to you. If this is the case, it can be helpful to talk to the professional who diagnosed you, or one that you are seeing now, and let them know you are uncertain about your diagnosis. Sometimes people will also seek a second opinion if it really feels like their diagnosis doesn’t fit. 

On the other hand, sometimes worry can stick around even when we have all the information, and the diagnosis seems reasonable. If you are someone who experiences worry about other things, and finds themselves asking “What if (something goes wrong)?” often, this will probably feel familiar. It’s pretty common.

Strategies that help with anxiety are the best approach here. Mindfulness can help refocus your attention away from these thoughts, or thought challenging can help you change the way you respond to that automatic “What if…?”

If you are currently seeing someone in relation to your diagnosis, I’d start with letting them know this is creating some stress for you - they can work with you to identify what approach would work best for you.

How can I help my friends and family to understand my diagnosis? It's a really big deal to me and I want them to understand my condition, but they sometimes resist and say things like "This doesn't define you" and "Not everything is a symptom" or even "I don't think you have that/that doesn't sound like you"

That sounds very frustrating and hurtful. It’s really reasonable for you to want your family and friends to understand your experiences and the way your condition impacts you.

I’m not sure if these have been said in general conversation, or if you’ve tried to have a conversation with a friend/family member specifically about your diagnosis.

Either approach is okay, but if you’re finding people are unhelpful or resistant when you mention your condition, then making time for a specific chat is helpful. It can be good to start with the friend or family member you think is likely to be the best listener.

Think about what you want to get out of the conversation - is there a way they can support you, do you want them to acknowledge you better when you mention your diagnosis, do you just want to be heard? 

It’s possible that when people say your diagnosis doesn’t define you they are trying to be helpful. This doesn’t mean it’s okay to dismiss your experiences. When someone means well but is being hurtful, they will generally change their behaviour when they realise that the other person feels hurt.

For example, you might say something like “When you say ‘not everything is a symptom’ I feel dismissed. Having a diagnosis has really helped me make sense of what is happening for me, so it would really help if you could try to understand my condition and how it impacts me.” Make sure to use words which feel natural for you, and personalise what you say to reflect what is bothering you the most.

You might find this guide on difficult conversations useful. 

Sometimes people may not know what to say instead of the unhelpful response, so you might like to chat together about what type of response you would find supportive.

Some people will be more ready to listen and change than others, but even changing one person’s response can make a big difference in how it feels for you.

What is a "normal" reaction to getting a diagnosis? 

People can have lots of different reactions to getting a diagnosis, there isn’t one ‘normal’ way to react. It’s pretty common to feel some strong emotions, but which emotions depend on your situation and experiences.

Many people feel some anxiety after getting a diagnosis - particularly if they are worried about what the diagnosis means for them or are feeling uncertain about how it might impact them in the future. 

Another possible response is sadness - sometimes after being given a diagnosis people feel a sense of loss - that they have lost their old ‘healthy’ self or that their life won’t be the same. Sometimes shame can also be a part of this, if you’re in an environment where talking about mental health is stigmatised. 

If a diagnosis is unexpected, you might feel a sense of shock, or of frustration if it doesn’t feel like the diagnosis is a good fit.

Not everyone is upset by a diagnosis -  for some people it can be a relief, either because it confirms something they already suspected, or because it helps have a name for what is going on. It can also help create a sense of community with other people with the same diagnosis, or a sense of hope by helping identify options for treatment or coping strategies.

This isn’t a complete list, and if your reaction isn’t on it, it doesn’t mean it isn’t a ‘normal’ response (which is pretty hard to define). It’s also ok if you don't have a strong emotional response - not everyone does, and not everyone closely identifies with their diagnosis.

If you have just been diagnosed, it’s important to give yourself some time to react, without feeling the need to respond in the ‘right’ way - people often find change stressful, and a diagnosis can feel like a big change (even though you’re the same person you were before the diagnosis).

For people who do experience distressing emotions, it can help to explore what the diagnosis means, how it relates to your experience, and next steps with the professional who diagnosed you (it’s ok to ask them lots of questions about the diagnosis). 

Many people find it helps to connect with other people who have the same or similar diagnosis, who can understand what you’re going through - this can actually be a great way to recognise that people are much more than a diagnosis - because in a group of people with the same diagnosis there will be a diverse ranges of experiences and personalities.

Hey, community 👋

Today is the day! 

Our guest psychologist Linda has answered your questions about how to cope with a diagnosis.