Living with an Invisible Illness
Just because you can’t see it, doesn’t mean it’s not there.
Living with an invisible illness can be incredibly isolating. From mental health conditions to certain chronic and autoimmune diseases, living with an illness that others can’t see can lead to judgement, stigma and widespread lack of understanding.
Living with an invisible illness often leads to judgement and criticism because others believe you look fine on the outside, and therefore must be “making up” your suffering. Being doubted so often can sadly make you doubt yourself because you feel like you’re going crazy when you feel so sick but no one can see that there is anything wrong- especially when diagnostic tests come back with nothing.
But with all this negativity don’t forget to give yourself credit for powering through each and every day, especially when the days can feel so long and difficult.
If your list of to-dos doesn’t include you, then you need a new to-do list. Schedule yourself first, whether it’s doctor’s appointments, massages, acupuncture, therapy, exercise, whatever it is that helps reduce stress and anxiety for you.
Don’t be afraid to ask for help! Sometimes we need help, whether it’s as simple as having your partner bring you medication and water or having a friend pick up your groceries. There is no shame in asking for help, and you can always return the favor once you’re feeling better.
Chronic illnesses can also cause sadness, frustration, and anger. Finding a way to release these emotions is very important. There is no right way to do this, what works for one person might not work for another, but finding a way to release negative emotions is crucial to taking care of yourself.
It is so important to listen to your body. Don’t feel guilty if your body is telling you to stay in bed all day or to pass up on the workout or cancel dinner. There is a difference between not wanting to do something but knowing you really should make the effort and your body absolutely crying out that it cannot handle anything extra. Your body knows when you need to conserve energy. If you don’t feel up to doing something, rest and recover.
Taking care of you will allow you to heal and thrive. This, in turn, will allow you to now give some of your time and energy to others because you have taken your own time to self-care first.
How to Help Others Understand Your Illness
So, what can you do to help those important in your life to understand your invisible illness?
Try to Educate them.
A simple explanation can go a long way in helping to explain your condition. Your willingness to talk about your pain and the challenges you face may help your loved ones in becoming more accepting of your condition. This discussion will also help loved ones to understand your limits, as well as what they can do to help you.
Other things you can do:
Bring them to a doctor’s appointments
Having health care professionals validate your experience can be impactful not only for your sake, but for getting loved ones to better understand your illness and how best to support you as well. Bring a loved one along to your health care appointment(s) and encourage them to ask questions.
Communicate your limits
Make it known to family and friends that with your condition, you may experience limitations with the level and duration of physical activities in which you can participate.
Educate loved ones about the variabilities in your pain and how this variation may mean that you can only commit to a certain part of an event or that you may need to wait until the day of the event to make a decision on whether you can attend. By being upfront about your situation, it will take away some of the stress, pressure and guilty feelings that may otherwise be experienced. By expressing your limitations, you can help you set appropriate expectations for others and yourself.
Build the right team
Not all health care providers have in-depth knowledge about chronic illness. Some practitioners may not fully understand your condition and may make you feel your illness is “all in your head.”
If you find that your doctor’s thinking or language doesn’t align with yours, or if they aren’t effectively supporting you in managing your health, don’t be afraid to find someone new. It’s important to have the right people on your team to facilitate your self-management and support you along the way.
How can you be more understanding if you don’t have a chronic illness?
If you know someone with an invisible illness, there are several things you can do to support them. It’s important to remember everyone wants to enjoy life and no one wants to be a burden; however, people suffering from chronic and invisible illnesses do appreciate your support and understanding.
While many of us may wish for a variety of material things this Christmas, others are asking for a momentary relief from ill health. If you know their story, reach out to them, listen to them, and try to understand. A comforting word, some empathy, and a helping hand could mean the world to them.
But most of all always be kind, because you never really know what someone may be dealing with.