Invisible Illness and Friends Who Don't Get It: What to Do
by Lisa Copen
If you have an invisible chronic illness you may discover that the invisibility factor of the illness can be much more of a challenge than the physical changes your body is undergoing. Most people who are diagnosed with an illness sooner or later accept the illness as being a part of life. In order to have a life filled with joy, one must educate one's self on the illness and that treatment options available, and then make choices.
Making those we care about accept it, or even acknowledge it, is out of our control. The skepticism of others about our illness may last a lifetime and cause deep wounds; our relationships and even our own self-worth suffer.
So, what you do when someone important in your life refuses to acknowledge the seriousness of your disease, or accept that the disease even exists? Here are four steps to change your actions and attitudes:
1. Go with it. Don't take yourself and your predicament too seriously when you're around the person. Understand that there is no magical discussion you can have that will make him change his mind. The odds are, the only way he will change his mind is by simply observing you and noticing your invisible illness as it begins to show some visible side effects. Your limitations, such as walking a long-distance, may become obvious without you having to explain it.
2. Grow with it. Use this as an opportunity to reflect on how you perceive other people and what you assume about their abilities. For example, when you're standing in line at the store and feeling wiped out, it is easy to assume "No one else knows how hard this is for me!" Surprisingly, nearly 1 in two people live with an illness and about 96% of the painful diseases are invisible. So the odds are that there are people who do actually understand how you feel. Also, think about what situations your friends are experiencing that you don't really understand. Is a friend suffering from a spouse who has had an affair? Do they have a parent who has Alzheimer's? Or have they recently lost a job? All of these events dramatically change one's life and your friends can use your empathy and understanding.
3. Get over it. You may find yourself thinking "No one understands!" so frequently that you are missing out on new friendships. Save yourself the grief and don't obsess over how much people sympathize or if they do it appropriately. Though we would all like a loved one to be able to experience what it would be like to slip inside our skin for twenty-four hours, it's never going to happen. If people around you feel like they can never please you, soon you won't have any relationships left. You cannot change how someone else thinks; you only have control over your own behavior. So make sure your conversations are full of grace.
4. Get on with it. Life is precious and short and no material things in your life can replace friends and family. It is true that the intimacy level in your relationship will not ever be high if your illness is not at least believed to exist. But if you still want a relationship, and it's a healthy one in other ways, it can happen.
The odds are that in time your friend will eventually have his own health crisis, and have some level of understanding about what you have faced on a daily basis. He may even turn to you for advice. Be supportive and encouraging. Don't say "I told you so."
Go with it. Grow with it. Get over it. Get on with it.
Relationships with those who don't understand the seriousness of your illness can exist. Be positive, accepting him for what he's able to give to the relationship, and have reasonable expectations. Someday, this may prove to be one of your most special friendships.