“I’m Diagnosed with a Chronic Illness; Now What Do I Do?”

It’s one of the biggest shocks you’ll ever experience: being diagnosed with a chronic illness.

Finding out that you’re sick is always bad news, but learning that you have an illness that might never go away again, that’s a hard pill to swallow. Because getting diagnosed with diabetes, arthritis, MS or Crohn’s disease doesn’t just affect your body, it turns your whole world upside down.

Those symptoms that are hurting you, messing up your plans and keeping you up at night? They aren’t temporary. They don’t go away after a good night’s sleep or resting in bed for a few days. All too often, chronic illness affects every part of your life every day.That’s why you probably have to make permanent adjustments to your daily routines, your work and social life, your hopes and dreams.

But when you’re just diagnosed with chronic illness, where do you start? What can you do to make sense of this earth-shattering news? How do you figure out what to do next and get a grip on this new reality?

The Psychological Phases After Diagnosis

Everyone handles being diagnosed with a chronic illness in their own way. So much depends on your personal situation and of course the kind of illness you’re dealing with. Is your illness progressive, could it threaten your life, are there effective treatment options available? But despite all these differences, research has found some common phases most of us go through after diagnosis.

Even if you’re somewhat expecting it, the definite diagnosis often still comes as a shock. You have a lot of information and emotions to process, so you may feel bewildered or burst into tears. Sometimes your brain goes on autopilot: you go through the motions, but it’s like it’s happening to someone else, not to you.

Of course, not everyone reacts the same way. Some people will actually feel relieved when hearing their diagnosis. After ages of uncertainty, the pieces fall into place and you have an explanation for all the symptoms you’ve been struggling with for months, or even years. With the right diagnosis, you can finally get better care and treatment options.

Whatever you’re feeling, that’s ok. There’s no right or wrong way to respond to your diagnosis.

There’s no right or wrong way to respond to your diagnosis.

When the novelty of the news wears off, you’ll probably become overwhelmed with emotions. Feelings of loss, grief, helplessness and despair wash over you. You feel betrayed by your body, and perhaps even by life/God/the universe for having to go through this. During this phase, it’s also hard to think clearly, with all kinds of worries and “what if” scenarios running through your mind.

Don’t fight this emotional rollercoaster, and don’t think you have to have everything under control and know what to do. Just keep in mind that – as impossible as that sounds right now – you won’t feel this way forever.

Because even if you try to deny (the seriousness of) your illness at first, over time it will become clear that you have to adjust to your new reality. There’s no escaping it: these health problems won’t go away any time soon, and you’ll have to deal with it the best way you know how.

Sadly, there’s no manual on how to learn to live with your diagnosis, but here are some science-backed tips to get you started.

“I’m Diagnosed with Chronic Illness – What Do I Do?”

1. Make room for all your emotions.

It’s completely normal to feel like you’re on an emotional rollercoaster the weeks and months following your diagnosis. You may swing from disbelief and despair, to anger about why this is happening to you, to that fighting spirit of “I’m going to beat this disease” – and probably back to despair again.

Most of us are scared of the ‘negative’ emotions you’re experiencing. Even close friends and family will be tempted to tell you “it’s going to be ok, just stay positive”. Despite their best intentions, this may make you feel even more alone, or upset that you aren’t able to ‘just live with it’.

Sadly, you can’t just push an emotional button and suddenly be ok with the situation. Accepting chronic illness is a slow and often painful process, that you have to go through to come out on the other side. It has no clear beginning or ending, and as life evolves, you might find yourself having to come to terms with new aspects of your chronic illness.

So let me tell you this: you have every right to feel heart-broken, helpless or furious at the universe for dealing you this hand. To be jealous at your healthy friends whose lives just go on, to get frustrated with not being able to do the simplest things any more, to see your dreams go up in flames.

Don’t push your sorrows and sadness away, but sit with them. Feel whatever it is you’re feeling, as scary as that may be. Because when it comes to coping with chronic illness, I agree with Robert Frost: The best way out is through.

“He says the best way out is always through. And I can agree to that, or in so far, as that I can see no way out but through.” – Robert Frost

After the initial shock and wave of emotions calm down, studies shows that proactively trying to get a grip on your situation leads to better outcomes of your physical and mental health than if you let life happen to you. Take a look at some active coping strategies you can use:

2. Learn about your illness and your unique body

Knowledge is power, and that’s just as true when it comes to your health. The more you know about your condition, the better equipped you’ll be to understand what’s happening and how you can adapt. What’s more, knowledge empowers you to take action and advocate for yourself.

So write down your questions for your doctor before your next appointment and search the websites of patient organizations for advice. Just make sure you get reliable information from trustworthy sources. You don’t want to base important choices on what some random person without relevant training on the Internet said.

Also, googling your symptoms and prognosis isn’t always the best choice. You can become even more anxious or focus too much on your bodily sensations. Not to mention that online information rarely tells you how (un)likely it is that that horrible side effect or exacerbation will actually happen!

Which brings me to my next point. As you’re researching your illness, it’s helpful to know how much information you feel comfortable with. Do you want to know about possible complications and future problems? Most people actively seek information about their illness, but around 20% of patients prefer not to know the details, or even avoid personal health information all together.  If that’s you, find a balance between staying informed and watching your boundaries.

Especially if you’ve been diagnosed with a progressive chronic illness, don’t look too far into the future. Get the information you need to handle this phase, and the next if you wish. You’ll deal with future problems when you cross that bridge. So much can happen and change in the mean time, from medical advancements to your own perception on life, it’s not worth losing sleep over tonight.

And finally, learning about your illness doesn’t only mean studying theoretical information about your illness, but also discovering how your unique body and mind work. Everyone is different, living in different circumstances, so what works for someone else might not work for you. When you put ten patients with heart disease together, you’ll also notice how the same illness will express itself differently in each person. So track your symptoms to discover patterns or triggers. Learn the basics of pacing, and how to apply that in your own life. Somehow, you’ll find a way to work with the body you have right now, even if it doesn’t function the way you wish it would.

3. Get support

When you’re diagnosed with fibromyalgia, COPD or ulcerative colitis, you don’t have to figure out what to do all on your own. Seeking support is one of the most helpful things you can do for your mental and physical health.

Hopefully, you have caring people in your life you can talk to and ask for advice. But you can also look for a support group in your area and talk with people who have been through what you are facing. You could also reach out to patient organizations for practical tips or connect with fellow ‘spoonies’ online.

What’s more, don’t be afraid to tell supportive family members and friends what you need. Sometimes you just want a shoulder to cry on, and not get advice on how to handle your situation. Other days, you could really use a helping hand. But the people around you can’t read your mind, or may not know how they can best support you. So when someone says, “let me know if I can help”, being specific can be helpful for you both. You can read more on how to rally the troops and get the support you need in this article.

You don’t have to go through this alone.

4. Find out how to manage your illness

An important practical step after diagnosis is learning about your treatments options. What can you do to ease your symptoms, to prevent worsening and/or manage your illness over time? And how do you make these medications, therapies and lifestyle changes part of your everyday life?

If your illness requires you to take meds, get informed by your pharmacist about how to take them, which possible side effects you may experience and potential interactions with other (over the counter) drugs. Never change the dosage of medications by yourself, or stop taking them all together without consulting your doctor first.

More so, learn how to provide your own self-care, like administering insulin shots, measuring your blood pressure or changing your colostomy bag. This can be overwhelming, daunting and confronting at first, but don’t worry, you’ll soon get the hang of it. You’ll also want to know what to do in a health crisis. What are the first signs of hyperglycemia, an asthma attack or a severe allergic reaction, and how should you or those around you act (besides calling an ambulance)?

Alarmingly, many people fail to follow the recommendations of their health care providers. Research shows that “advice given to patients (…) to cure or control disease is too often misunderstood, carried out incorrectly, forgotten or even completely ignored.” But obviously, your doctor didn’t tell you to take your meds, quit smoking or reduce your salt intake for no good reason. So make a conscious effort to incorporate these new health behaviors into your life. One way to make it easier to stick to your new routines is to combine them with existing habits, like taking your vitamins with your breakfast or doing your physical therapy exercises while watching the evening news.

By focusing on the things you can control and setting small but concrete goals, you’ll learn to better manage your illness over time. And that will hopefully lead to less symptoms and an improved quality of life.

5. Cope constructively with stress and negative feelings

It’s tempting to pretend like nothing has changed or to binge-eat your sorrows away, but research has shown that avoidance and escape coping strategies only hurt you in the long run. On the other hand, problem solving strategies like asking for help and creating an action plan helps you to better manage this stressful situation.

Having a sense of personal control over your life also has a big impact on how well you’re able to cope with your disease. People who feel that they can exert some level of control over their situation, even in the smallest way, have better heart health and immunity, less depression and anxiety, and more satisfaction with their life. So try to focus on the things you do have power over: how you talk to yourself in your mind, what you put into your body, your mental diet – the kind of information you consume – and noticing the things that are going well right now.

It’s normal to worry about your health – I’d even say it’s a natural part of coming to terms with your new reality. What you should try to prevent though, is keep going over and over the same problems in your mind. That’s because rumination is one of the biggest predictors of mental health problems like depression, anxiety, PTSD and addiction. You can read more about when it’s helpful to think things through, to distract yourself or to be mindful here, or check out these 6 short-term strategies to stop overthinking right now.

Finally, experiment with ways to better deal with stress. When you become chronically ill, you’ll be faced with lots of stressful situations and negative emotions, from hospital visits and scary treatments to worries about your future, finances and friendships. And digging into another bowl of ice cream will only take your mind of your problems for a moment. Not to mention that unhealthy habits hurt your health, on top of your illness and the accompanying uncontrollable stress.

So learn how to relax your body and mind in constructive ways, like a warm bath, a gentle stroll around the block or calling your mom for a quick pick-me-up. Even if you’re sick in bed, you can try breathing exercises and mini meditations. Whatever helps you to release tension from your body, quiet your mind and prevent stress from building up.

6. Gradually get a new, manageable perspective

Being diagnosed with chronic illness instantly changes the way you see yourself, your life and your future. Before you got sick, you automatically assumed each day that your body and brains would function well. And now that’s no longer the case, you may feel betrayed by your body and struggle to make sense of who you are if you can no longer do your job, look after your family or excel at your beloved sport.

It’s hard to believe now, but once the rollercoaster of emotions slows down a bit, you can gradually learn to accept your illness and find new ways to express yourself, go after your dreams and give meaning to your life. Adjusting to your new reality will take a lot of time, effort and support. You’ll need to tweak your routines and mindset every time something in your life changes. And some days, being chronically ill will still make you sad, frustrated and depressed. But eventually, you will find a way to live a good life with chronic illness.

Always seek help from a therapist or other medical professional if you’re struggling to adjust to your new situation, especially if you show signs of depression and anxiety. Remember, you don’t have to go through this alone. 

For more in-depth advice on how to cope with the emotional, practical and mental aspects of chronic illness, sign up for free weekly health sessions delivered straight to your inbox.