Being diagnosed with, or having a family member diagnosed with a chronic illness can have the ability to stop time. Meaningful Minds Psychologist, Melissa Cilliers, looks at the emotional impacts of chronic illness.
Chronic illness, no matter in which form it appears can be debilitating, exhausting and if you are lucky, life changing. For people with a chronic illness, life becomes a daily struggle in all spheres of life: physically, emotionally, financially and even professionally.
Having worked with individuals with chronic illness I have noticed an overwhelming sense of hopelessness in them. Understandable, yes... necessary... no. Now, I know as you are reading this you are thinking: “how would you know, you have probably never struggled with a chronic illness? ”. You would be right, I haven’t, however I have been witness to someone very close, who suffered a chronic illness. Is it the same thing? The answer is no. However, I will offer my pearls of wisdom in attempt to alleviate stigma, psycho educate others and offer some support.
The Emotional Phases of Chronic Illness
Being diagnosed with a chronic illness can come as massive shock. It's normal to experience a range of emotions in the wake of such a diagnosis. One can experience a rollercoaster of emotions from anger, shame, guilt, grief and most commonly fear. Fear of the unknown has the ability to send someone into a full blown panic attack or ongoing anxiety. Especially if the individual has a history of such mood symptoms, anxiety and depression are common responses to the diagnosis of a chronic illness. One needs to take time to digest the news of a chronic illness, during which emotions will oscillate between all of the emotions mentioned. Another common (and unhealthy) response is denial. Some days you may be tempted to pretend you never received your diagnosis. However, facing your diagnosis head on is the best way to cope. Where do you start though?
Coping With Chronic Illness
The best way to face the diagnosis is to educate yourself around the illness. Write down questions to take to your doctor (even if it is at every visit). Having more knowledge will prevent you mind from over thinking and catasrophising, leaving more and more space for uncertainty. Moreover, accurate knowledge will make you feel empowered and more in control. Try to avoid consulting Dr Google, this will inevitably lead you down a path of self destruction.
Gain control over the things in your life that are, in reality, in your control. When diagnosed
with a chronic illness, you can easily fall into a psychological space in which you feel that you have very little control over anything. This isn’t the truth, and its unhelpful thinking. There are many things that are still in your control including your nutrition, self care, taking your prescribed medication and psychological wellbeing. Focus on these aspects; let your doctor focus on the physiological things.
Finally and most importantly, rely on your support system. Research has shown that sufferers on chronic illnesses live more fulfilling lives when they have and rely on their support systems. Lower you potential stressors by letting go of unnecessary obligations. Don’t feel ashamed in asking for more help from family and friends, after all, they are there so that you can rely on them in times such as these. Communicate with them about how can best help you through each struggle or through everyday..
The Mind Shift That Occurs
You may start to appreciate the little things a little bit more. Revel in the days that your symptoms are not flaring up or when you have enough energy to partake in one of your favourite hobbies. Patience becomes a skill that you will master. Chronic illness can have the tendency to be a ‘hurry up and wait game” and especially when you are waiting to see a doctor, for test results or scans. We need patience with ourselves, and patience with others, and if you have a chronic illness, you may come to realize that patience truly is a virtue.
Assertiveness is another skill you will master. It is important to advocate yourself and speak up when you feel someone is treating you unfairly. This skill is developed rather quickly when one is diagnosed with chronic illness and it is very important one in the process of taking charge of your own health. I have heard people refer to this as “loosing their thought filter”. This isn’t something you should remotely feel ashamed of doing.
Empathy, the third important skill, is one that comes rather naturally. You become a spokesperson for others that are also suffering pain, also suffering sickness. You immediately know how it feels, firsthand how it is to suffer and as a result you may jump to the assistance of others that need the support.
Looking From the Outside In
A very important topic to address as part of discussing chronic illness is how the people in your life can support you. So here is a list of things supporters of loved ones with chronic illness need to keep in mind:
Their illness is not imagined and is not always obvious- don’t dismiss their symptoms or pain simply because you can’t see any physical evidence.
Having a chronic disease is not like having the common cold, one is short term, the other long term.
Talking about the future can be anxiety provoking and evoke fear
Please don't say "You poor thing." I don't know anyone who feels better hearing that.
Don't don't don't treat the person any differently than you did before.
If you or someone you care about, have been diagnosed with a chronic illness and require more support, please feel free to book a session with one of our psychologists. Sometimes having a separate, safe space to vent about your struggles can be very healing.