Click on the condition below to be brought to a list of resources. Unfortunately, there is a lack of resources for parents with chronic illnesses so most resources are for chronically ill children.
Please email us at EDSandCoSociety@gmail.com if you come across any helpful resources OR if you would like to be interviewed about parenting while chronically ill.
When having to care for dependents while managing your own chronic illness, consider the following things to help you manage your responsibilities and life balance:
Simplify your life. Focus your efforts on your essential needs and tasks. Don't add more responsibility or commitments if it negatively impacts your physical or mental health care needs.
Learn how to batch your commitments & activities. There have been a lot of resources written on forming helpful habits in recent years. One of the key strategies across many of these resources has been the concept of batching. Consider learning how to meet your needs and commitments by doing 2-3 things at once (e.g., multiple family members' appointments booked altogether with the same provider, listening to a podcast while doing dishes or cooking, talking with a friend while out for a walk, etc.).
Get help. What do you struggle with the most? Is there a way to get help by outsourcing it by paying someone to do it or trading for it in exchange for services? Do you need to talk to someone because you're feeling lost or overwhelmed? Getting help from others when you need it is important to your long-term care plan, and should not be ignored.
Find your community. Find the kind of support you want and need. Is it in-person/online or active/passive participation? If you feel lonely, do you want to connect with others because you want to have a social connection or someone to help you through your struggles? We are all different, and how you answer the questions above will determine the type of people or resources that would help you with what you need.
Find your new normal. Whether you are newly diagnosed, seeking a diagnosis, or a long-term spoonie, it's important to check in with yourself to ask if your current routine and lifestyle are working for you. Chances are that you will occasionally find a need to revisit your routine or lifestyle because things can change. Accept your current/changing needs and limitations, then add any supports you need now. Adapting and accepting a "new normal" will help you feel less reactive and more in control of your (often unpredictable) spoonie reality.
Written by our Vice-President, Colleen Egli