This is a very difficult subject to raise with anyone suffering with a chronic illness. It is worryingly common to speak with a chronic illness patient who has negative experiences surrounding doctors and mental health. There have been too many doctors’ appointments put down to psychosomatic symptoms, too many emergency hospital visits when people are told that it’s all in their heads and if they buck up, they’ll feel better. It can feel as though the minute that you say that you are stressed/sad/anxious, any other explanation for your symptoms is brushed under the carpet. Thankfully this attitude is waning within the medical community as the ‘old guard’ retire and the reins are taken up by more recently trained doctors who are au fait with current understanding of functional disorders.

Pain is depressing, and depression causes and intensifies pain. People with chronic pain have three times the average risk of developing psychiatric symptoms — usually mood or anxiety disorders — and depressed patients have three times the average risk of developing chronic pain.
— Harvard Medical School

In truth, many chronic illnesses do straddle the grey area between physiological and psychological responses to pain. Dark moods plague more than a third of people with chronic diseases. Depression can keep you from taking important medications, seeing your doctor when you need to, or pursuing healthy habits. Our bodies find it incredibly hard to cope with daily pain and illness

If you have depression or low mood, this does not mean it is the cause of your symptoms. You may feel sensitive when doctors or others ask you how you are feeling, but a good doctor should always ask this, regardless of your diagnosis. For example, patients with multiple sclerosis can suffer from anxiety and depression. When they do, their quality of life is generally not as good so it’s important to do whatever is possible to improve them. The situation with functional symptoms should be no different.
— Dr Jon Stone MBChB FRCP PhD, Consultant Neurologist at the University of Edinburgh and Specialist in Functional Disorders

The bottom line is this: depression worsens chronic illness and in turn, chronic illnesses worsen depression.

When first diagnosed and, as you learn more about your illness and how to take care of yourself, you may experience a wide range of feelings and emotions. People I have spoken to have registered, among others, feelings of:

  • Anger because they have the illness
  • Fear that their condition may deteriorate
  • Sadness or depression because they may not be able to live the way they used to or envisaged
  • Embarrassment or shame around their ‘new normal’
  • Grief at the loss of their previous self
  • Confusion or stress about how to take care of themselves

With this being a only small sample of concerns and emotions, the link between chronic illness and instability in moods is plainly visible. I can tell you that you can either live with the illness or allow it to live with you, but it simply isn’t that easy. You're not going to read the words on a website and feel magically better, but there are things that you can do that may help you take back as much control as possible. In discussions with medical professionals, psychiatrists, and psychotherapists, the following points were raised and suggestions made.

Understand your illness


Read, listen, ask, and research. When you are welcoming an uninvited chronic illness into your life, it is important to understand as much about your symptoms and prognoses as possible. Contact your local patient services, reach out in Facebook groups to discuss symptoms and you’ll soon realise that you are not alone. Keep a working document in the notes on your phone, on your PC or in a notebook and note down all the question you have so that when you have a chance to meet with your doctor, you won’t forget anything. Ask your doctor about any medications that you are taking which may have had an impact on your mood. If you don’t ask, you don’t know.

Listen to your body


Pay close attention to what seems to ease your symptoms or provoke a flare. Keep a daily diary using a notebook or calendar to record trends and other insights that might help you manage your symptoms. Share your notes with your doctor so your healthcare team can better understand how your condition affects you. Don’t feel embarrassed to put everything and anything down, there may be a pattern that they have seen before and that you didn’t notice- if you censor your records, they wouldn’t necessarily spot it.

Have confidence in your doctor


By this we don’t mean trust everything the doctor says but rather- be certain you have the right doctor. Whether at your GP practice, emergency hospital visits, or referral appointments, I’m sure that you have already seen a variety of doctors and have warmed to some and taken against others. Living with a chronic illness, your relationship with your doctor is second only to that with your partner and family. You need to fully trust and believe in your doctor to do the right thing for you and you must feel able to be open and honest. If you don’t feel that you have this relationship, ‘shop around’ and ask for second opinions.

See a counsellor

A counsellor will be able to tell you if you need more serious medical help. It's amazing how quickly talking about your moods with someone else (a professional counsellor, not just a friend) can uncover things that afterwards might seem obvious but in the moment of darkness are impossible to see. They are well trained in assisting people in understanding their emotions and responses and are not there to judge or pass comment on your life. It can be hard to go and see a counsellor for the first time but if you can create a safe space in which you can talk about your situation, you are widening your support network.

Keep a close eye on your relationships


Ah the vicious cycle- Loneliness can often lead to depression but it is all too easy to isolate yourself when you feel so awful. It can be scary to open yourself up to support from outside your immediate connections but people may surprise you. Less known friends may step up the plate whilst people who you thought you could count on, fall by the wayside. You may find that you have limited energy and time available for socialising and there will be some friends, or even family members, who may not understand the challenges you’re facing. Be selective and treat yourself with kindness. You are working so hard to be the best you can be, don’t give your energy away to those who don’t deserve it. Focus on the relationships that are most important to you. Let go of relationships that add more stress than support to your life, they can still be there but don’t allow them to sap your strength and spirit.

Treat yourself like a friend

Give yourself time. Pamper yourself with baths, naps, flowers, massages. Take time out to sit and do nothing. Watch clouds, listen to music, read a book. Just because you're ill doesn’t mean that you have to stop being happy, just as being happy doesn’t mean that you're not ill. Be kind to yourself and stop expecting the world from your body and mind. You're working so hard, acknowledge this and reward yourself.

Get creative


Write down your thoughts and secrets. Paint or draw pictures about how you feel. Write a song. Scream your favourite lyrics at the top of your lungs. Build something. Get out in the garden and don't wear gloves! Get dirty, get creative and don't worry about whether it's good enough- there are no guidelines or parameters and it may give you a chance to release your tension and feelings.

Whilst these suggestions may help to a certain extent, there is no substitution for going to see your GP and talking through your symptoms and concerns. Your GP is there to help but if you are concerned, take literature to help support your position.