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When Friends Don't Understand Your Invisible Illness: What to Do

by Lisa Copen  
8/18/2008 / Health

If you live with an invisible illness, you may find the emotions of coping with people's doubts about it can be harder to manage than the disease itself. Most of us with a chronic illness must eventually accept our condition. In order to live our best life, we need to educate ourselves about the disease and make well-researched decisions about treatment.

Those with illness, however, have no ability to make others except the illness or even acknowledge it. We are loved ones are skeptical about the existence or seriousness of her disease, it can be devastating. It can wound our self-worth and cause problems in our relationships.

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. Your life feels very serious right now, but don't take your situation too seriously when around your friend. Unfortunately there is not a magical talk you can have that will make him instantly change his mind about your health situation. Most likely, the only way for him to rethink his perception of your illness is for him to observe you and your typical activities. Though your illness may be invisible, he may start to witness some visible symptoms. Perhaps you may have some new limitations, like being unable to walk a long distance; and rather than explaining what you can and cannot do, he might just see 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. It is easy to obsess over the fact that no one understands what your daily chronic pain is like. Save yourself a lot of grief and don't do it. We would all like a loved one to be able to slip inside are skin for twenty-four hours, but this level of understanding of our disease will never occur. If you began to resent people who don't understand, soon all your friendships will be tainted. Do not take a friend's lack of empathy personally, even though it feels personal. You cannot change someone's mind; you can only control your own behavior, so make certain you have conversations that you won't regret.

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.

Plus, chances are that your friend will encounter a health setback at some point in his life. He will have a glimpse into what you have been experiencing and he may even seek you out for advice. Give your support and encouragement generously and avoid saying, "I told you so."

Go with it. Grow with it. Get over it. Get on with it.

Is it possible to have relationships with people who don't understand the seriousness of your illness? Yes. Accept him for what he is able to give, and know when to back off if the relationship becomes destructive to your emotional state. Have reasonable expectations. In time, this may end up being one of your closest friendships.

Get a free list of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen when you signup for to HopeNotes invisible illness ezine at Rest Ministries. Lisa founded Invisible Illness Week

If you lead a support group or are considering it, don't miss Lisa Copen's new book, for your ministry needs. Over 300 pages with step-by-step instructions on how to write a vision statement, promotion and attendance and much more!

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