NAVIGATING COVID-19 WITH AN INVISIBLE ILLNESS
Keep yourself safe & well during COVID-19 pandemic
The term ‘invisible illnesses’ refers to medical conditions which aren’t easily seen by other people. They can include, but are not limited to:
• chronic pain
• fibromyalgia
• arthritis
• mental illness
• myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
• postural orthostatic tachycardia syndrome (POTS)
• Ehlers-Danlos syndrome (EDS)
• dysautonomia.
During this time, it’s more important than ever to prioritise your health and avoid placing unnecessary stress on your system – there is a lot to digest already. The following tips are designed to help you navigate coronavirus for yourself, or if you care for someone with an invisible illness. Please note these are in addition to the standard precautions recommended by the World Health Organisation and should not be treated as medical advice.
1. Understand your risk profile.
Some individuals are described as having a higher risk for complications if they contract COVID-19. These are known as ‘vulnerable populations’ or ‘high risk populations’. According to the Australian Government, these are:
• older people
• people with weakened immune systems
• people with diagnosed chronic medical conditions (such as high blood pressure, heart and lung conditions, kidney disease and diabetes).
If you do not fit directly into the above categories, it is best to speak with your health professional about your own personal risk and what to do if you feel that you have COVID-19 symptoms. For most people with invisible illnesses, it is important to consider the impact that being unwell would have on your ability to self-manage your condition, rather than complications of COVID-19 itself.
For your unique condition, the relevant organisations (e.g. Emerge for ME/CFS, The EDS Society, Dysautonomia International) have done extensive work in putting together support and information for specific population groups.
2. Consider what is ‘essential’ for you and your health.
With many regulatory guidelines now in place to help protect the population, the pace of life has slowed down considerably. This can be a perfect time to assess what matters to you,
what helps your health, and what hinders it. If you find that you have extra time due to fewer outings, how do you occupy that time? Although it can feel tempting to spend your time viewing all of the news stories, it can be counter-productive to your wellbeing, particularly if you notice your stress response being activated.
Now that the initial shock is over, consider ‘letting news find you’ rather than seeking it out constantly. Our brains have an inbuilt negativity bias and we can certainly find ourselves getting ‘stuck’ in the news cycle. Trust that major announcements and things you absolutely need to know, will be communicated in an accessible way for all.
3. Receiving and giving support.
One way to alleviate fears of an uncertain future is to focus on what you can control. If you were to become unwell, do you have a support network in place? Can you access telehealth from your home? What resources would you need delivered to your home (food, medications, other support items)?
It may help you to create a list of people that you know you can reach out to, for certain things. If you are reading this and you don’t have an invisible illness, you can also help by letting people in your life know that you are available to support them during a health crisis (if safe and appropriate to do so).
If you would like to help someone in your life, rather than asking, “what can I help you with?”, consider a statement such as, “I am going to drop off some staples for you. Do you need anything else while I’m out?”. Remember that it is often uncomfortable for people with invisible illnesses to vocalise their needs, as they may have had challenges having them met in the past.
The take home message. A phrase that people with invisible illnesses often use is: ‘just because you can’t see it, doesn’t mean it’s not there’. In these times of the COVID-19 pandemic, it has never been truer. Follow all standard precautions to keep yourself safe and remember to ask for extra support during this time if needed.
Jennifer Smallridge is an Accredited Exercise Physiologist at Upwell Health
Collective in Camberwell, Victoria; as well is a Complex Care Coordinator at Zebras Australia where she specialises in helping those with chronic health conditions.