A guide for anyone with a new diagnosis: What to do now, which steps to take and how to cope.
Getting a new diagnosis can come with many mixed feelings. It can feel exciting, and a relief after trying to find an answer for years, and it can be motivating to finally find out, what is going on and to get some ideas on what to do. But it can also feel overwhelming and extremely sad- especially if you get a diagnosis of a chronic illness. All of these feelings can happen at the same time- and this is perfectly normal.
Where to start?
In the beginning after getting a new diagnosis, you may feel overwhelmed and not know, where to begin. You may want to try out 100 different things and you may also feel pressure to get back to normal as quick as possible. A new diagnosis can come with a rollercoaster of emotions, and that is ok. Know, that you don’t have to be “back to normal” as quick as possible- taking as much time as you need to process these news is important.
But before we start:
In this article, I want to give you some tips and tell you about the things, that helped me when I was newly diagnosed. Please note, that every person may feel different about this, and there is no one-fits-all solution for something like this. These are just the things that helped me, and maybe they help some of you too. Know, that I am not a medical professional and I cannot give any medical advice!
Content of this article:
1. Find a doctor or a medical professional who you can trust
3. Journal your symptoms and activities
1 Find a doctor or a medical professional who you can trust
The first step is a very crucial step and if you have this, you already have a big chunk down: finding a doctor or any other medical professional who you can trust, and who you feel supported by. Maybe the person who diagnosed you already is this person, maybe you've been seeing many different healthcare providers over the last months, and you’re trying to find out, what to do next.
Having one person on your side who you can trust is crucial, because it gives you the chance of having some professional guidance on what steps to take next.
Sometimes when we are on our path to finding a new diagnosis, we may see different doctors, get from one referral to the next, get test after test done, and it can be very confusing and overwhelming at times. Sometimes we even get different opinions from different doctors and it can be difficult to know, what to do and whose advice to follow.
My advice is: find one doctor, who you really trust. Maybe he’s the specialist in the field who found your diagnosis, maybe it’s your family doctor who has known you for years: listen to your gut and see, who you trust, and who you can be honest with. When trying different therapies and different things on your healing journey, it can be important to have a person who you can ask questions, and who has the overview of your case. One person who is tracking your symptoms, your medication, your treatments and your progress. Someone you can trust whenever you have questions.
Many people with chronic illnesses have experienced medical gaslighting at least once in their lives, and it can make you very insecure and create trust issues when it comes to medical care. Having one doctor (or another medical professional like a therapist) on your side can be a big support and offer you guidance when it comes to making decisions.
Also: You are allowed to get a second opinion! It is your right to get the best possible medical treatment that is available, and asking for a second opinion can sometimes help if you need more questions answered or if you are unsure about something. People are often discouraged to "shop around" but when it comes to your health, you are allowed to seek out advice and find someone who fits your needs best.
I know, that finding a good doctor who you can trust can be tough and is often a question of access. How do I find a doctor who has knowledge about my illness?
You can ask around in local patient organizations or Facebook groups if they have some recommendations, which brings me to my second point:
2 Find a support group
When we are newly diagnosed, everything can feel very overwhelming and it may feel as if we are completely alone in this. Especially if it is a rare illness, we may not know anybody who knows what it’s like, and that can feel pretty isolating.
Finding other people who know exactly, what you are going through, can be a big help.
Not only can they offer emotional support and make you feel less alone, they may also be able to offer some practical advice and guidance. Of course, when it comes to medical advice, your doctor should be the person offering you the advice, but people with your illness in your area can offer you some insight on where you can get certain tests done, what to keep in mind when you have to do some paperwork and so on.
And of course, the emotional support is extremely valuable. Dealing with a chronic illness can be really hard, and sometimes it is really relieving to talk about it with people who know exactly, what it’s like. It is different to the support from friends and family who may be as supportive as possible, but you only really know what it’s like when you went through it yourself.
How to find a support group?
You can try and see if there are any self-help groups for your illness in your area, or alternatively check online! There are many online support groups, for example on Facebook, dedicated to certain illnesses, that are there to offer support.
I also found many people through Instagram or other social media, and building these connections has been very meaningful and helpful.
You are never alone!
3 Journal your symptoms and activities
In the beginning, everything may feel very new and overwhelming, especially when you are trying new treatments or medications. Your doctor will ask you from time to time, how you are reacting to a certain treatment and discuss the progress you’ve made, but sometimes it’s not so easy to answer, as it is easy to lose the overview of the situation – especially if you have tried a bunch of different things!
Especially when you have a dynamic illness where symptoms fluctuate a lot, it can be really difficult to keep an overview of everything and keep on track.
This is where a journal can help: it gives you the possibility of staying organized and remembering things you may otherwise forget.
Don’t pressure yourself into doing it perfectly- but keeping track of your symptoms and activities can help you figure out certain patterns that you may otherwise not be able to see- for example: whenever I take a walk I feel worse afterwards, or whenever I eat a certain food, I feel x afterwards.
I started out by tracking my symptoms, my activities, my medication and supplements and also my diet for a few weeks, because I wanted to find out if there were any correlations between certain foods, supplements and the symptoms I was experiencing.
I only did it very accurately for a few weeks, until I got a feeling for it, and then I slowly did it less exact, and now I’m only tracking some of my symptoms.
But doing this has helped me in getting to know my body better and seeing, how it reacted to certain things.
Additionally, I also used a fitness tracker with a heart rate monitor, to help me figure out when I would go into PEM (Post exertional malaise) and know, when to stop.
These documentations can help you at your next doctors visit, to have an overview and articulate, how certain treatments have made you feel, what things were helpful, and what things were not. You can either write the things down manually, or use apps to keep track of everything like Symple or the You+ME Symptom Tracker for ME/CFS.
If keeping a journal stresses you out- take it as easy as possible! You don’t have to do it perfectly, just try and find out what works for you.
4. Trial and error
You may be confronted with lots of new things, lots of tips and tricks and things that have helped other people. Now it’s time to figure out: what helps you?
Every body is different, and every body reacts to things differently. While some things may be helpful to one person, they may not be helpful to someone else, or even counterproductive for someone. When it comes to health, there is no one fits all solution. Every person is individual and so is our health.
We may feel pressured to try ten different things because your friend’s cousin has healed this condition with xyz – but that doesn’t mean it will work for you.
It is time for you to find your own path, and figure out what the things are that are helpful to you, and which things are not.
Your journal can help you keep track with all of that and help you identifying, which things were the most helpful, and maybe it can help you develop an “action plan”.
Getting a new diagnosis and struggling with your help can feel like you are losing control, and it can make you feel helpless at times. Developing an action plan together with your doctor, of things you would like to try, may give you some of that control back, offer some clarity and give you an overview of the things you may want to explore.
But when you do this, always keep in mind to take it easy and:
5 Give yourself some time.
You have just been diagnosed, so what’s important now is your well-being and your mental health. Getting a new diagnosis can be extremely overwhelming, and unfortunately there can be a lot of pressure from the outside to get as fit as possible as fast as possible – and that can be really stressful.
What should be your priority now, is to take good care of yourself and take as much time for yourself as you need! It can take months to adjust to this new situation, and that is completely ok. There is absolutely no need to pressure or even rush yourself.
Being diagnosed with a chronic illness can be really challenging and make you feel all kinds of emotions – and it can take a toll on your mental health.
Now is the time to find out, what type of help you need and what things help you to take care of your mental health. If you don’t know where to start, I’ve written an article about this HERE.
You also may learn some new values and find new love for yourself, since an illness can change our lives completely. You may not be able to be as productive as you once were, but maybe you find out new things about yourself that give you some new confidence.
Your worth is not measured by your productivity
6 Learn to ask for help
We often grow up thinking, that we need to do everything on our own. But when we become ill, we might not be able to do everything the way we were able to, and that can be challenging. We even may feel shame about the fact that we can’t be as productive as we used to be. But know, that asking for help is completely ok.
If you struggle with asking for help, ask yourself this question: if your friend was in your situation, and they asked you for help, what would you say?
Your answer is yes? See – that’s what your true friends are thinking about you.
A true friend doesn’t mind being there for a friend when they are in need of help.
And as cliché as this may be: challenging situations absolutely show you, who your true friends are. I sometimes get asked, how my friendships and relationships changed after I got my diagnosis, and I have to say: they got so much stronger. It really showed me, who was on my side and who I could rely on, and it showed me how supportive my friends were.
It also showed me, that some relationships weren’t as solid as I thought they were, and even if finding that out was hurtful, it brought me clarity. Now I know, who I can really rely on, and that is very valuable.
I was also seeing a therapist during the time I got my diagnosis (and I still am!), and this was extremely helpful. It may be scary to take this step, but seeking help by a professional is something you can absolutely profit of, and it can make you feel guided and supported.
We should never feel ashamed to ask for help, especially when it comes to our health!
Remember: Asking for help is not a sign of weakness!
Being newly diagnosed can be a challenge. It is ok, if you need some time to adjust to this situation. Know, that you are allowed to take all the time you need.
Know, that you are allowed to grief and feel all the emotions that may come your way. Know, that you don’t have to be perfect, and that you are valuable and loveable, just the way you are.
What things helped you most when you were newly diagnosed? Please feel free to let me know! Find me on social media @rea.strawhill
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