GUEST BLOGGER: Can You be Friends If They Think You Are Faking Your Illness?
by Lisa Copen
[This article can be reprinted "as is" for your own web site, blog or personal use]
Are you interested in being a guest blogger? We are having guest bloggers through Sept 14th, 2008! Send us your submission to be a guest blogger for National Invisible Chronic Illness Awareness Week.
……………………………………………………………..
Can You be Friends If They Think
You Are Faking Your Illness?
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.
But we have no control over our loved ones when they choose not to accept our illness, or sometimes even acknowledge it. Their skepticism can last a lifetime and damage our self-worth and many 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. No material things in this world can replace relationships you have. If a loved one doesn’t acknowledge your illness, it’s true that the depth of your friendship will never be what it could be. But if the relationship is healthy in other ways, and one worth saving, you can keep it.
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.
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.
I believe National Invisible Chronic Illness Awarness Week is important because… it gives us a chance to bring people who live with thousands of different illness together and discover we have more in common than not. We can encourage one another while also creating a deeper understanding among the “healthy” population that most illness is invisible and that many of their preconceptions about people with chronically ill aren’t always correct.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week, Rest Ministries and the author of various books on chronic illness. Get a free list of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen, just sign up for HopeNotes invisible illness ezine at Rest Ministries.
This is testy – from both sides.
When I suffered from fatigue (adrenal, anemia, Candida) I was very bothered by my mother who constantly wanted to know why I hadn’t finished writing my wedding gift “thank you” notes – why I wasn’t settled into my home or making new friends or joining this club or that. It got to the point where I avoided talking to her.
Finally I worked with the Q-Tip Slogan Quit Taking It Personally. I also realized that the person who was most critical of me – was me. That resentment is what energy to her words. She wasn’t the one I wasn’t getting along with!
Now on the other side … I have an in-law with Fibro. We’ll call her “B.”B and I are no longer on speaking terms because she resents my attitude about her condition. I brought over a healthy meal once (she eats like crap, drinks sodas etc. etc.) I also loaned her daughter a book on healthful foods.
I don’t accept that she has to be so overweight or in such physical pain. To my knowledge she does not work with any specialists aside from the standard white coat, 5 minute doctor appointment.
Another friend, Belle, was in much worse condition than B (fibro + diabetes + emphysema). She transformed her diet and lost 60 lbs. She kept going to different doctors until she found the right one who would help her. She took up Chi Gong and got her mental and physical grace back. These improvements also got her off of oxygen. Her physical transformation was amazing.
I think that, no matter what, we have a lot of power to change our physical circumstances and some of us just choose the pity pot over doing whatever it takes to change for the better.
To recover from fatigue I had to work at it – researched this, tried that, tried this – changed this, eliminated that. It took me years to fully come back. I will always have to work at it to those gains. There was no graduation party!
It isn’t because it was easy for my girlfriend came back or me. We just wouldn’t give up until we got out miracle. I hope whoever is reading this won’t either.
viveca
August 15, 2008
thank you for a very good post, i agree with everything you said
Laura
August 16, 2008
Honestly, I think Viveca’s comment exemplifies exactly the problem many of us with invisible illnesses face.
I’m overweight (between pregnancies, stomach issues, medicine-induced weight gain, etc.). Weight bearing activities are a major problem for me and I have post-exertional malaise, so exercise is tricky. I do not believe in using most alternative remedies- I don’t have the money or the time to waste on things which ar emonstly a scam or at the least unproven, not to mention that probably 99% of these are based in occultic or Eastern religious practice and philosophy (I’ve researched this subject in depth, both by research and through personal experience). I have several specialists, but there is really only two I see regularly.
These diseases are tricky, and little is known about them. As a CFIDS/FM support group leader, I’ve heard a lot of personal stories. Some people get diagnosed, make a few lifestyle changes, maybe take a sleep med, and have vast improvement. Others try everything in the world and still get worse. The range of severity varies drastically but the reality is 30% of people with FM and CFIDS are severely disabled by their illness and the subsequent copnditions that usually go along with it.
I can’t STAND the “You know what you really need to try is…” or “Well, if you just did this…”. Often times I DID try this, or used to do this, and it either didn’t work or there is some reason why it is more difficult. I know my faults, and I’m working on them, and I don’t need resident “experts” who think they know someone “worse” then me who got “cured” telling me how to live my life. How do you know they’re worse then me? How do you know what my other conditions are that I’m not telling you? How do you know extenuating circumstances?
I could never be friends with someone who thinks I’m faking. My illnesses affect too many areas of my life, like it or not. Plus, it says quite a bit of what they think about me, and it usually shows a lack of compassion.
I don’t mean to say I don’t believe in personal responsibility. I do, and I certainly believe we have a moral obligation to take care of ourselves and work to improve our health to the best of our ability. But sometimes what seems like little to no improvement to you is a big step for someone else.
Emily
August 18, 2008
Lisa what wisdom! I wish I could have read this twenty years ago when my illness first began. I was young and lost important relationships due to not knowing how to handle family members who didn’t believe I was ill. Twenty years later, thank goodness, I have learned much and grown tolerance and patience for those I care about who do not understand my physical condition.
As you shared Lisa, along the way, often years later, some have also developed invisible illness and have come to truly understand. Family members who didn’t get it twenty years ago do now, because they have “seen” the effects of my illness through the years.
Lisa, this post can serve as a guide to all of us who live with invisible chronic illness on how to gracefully navigate and keep the relationships we care about. I’d love to keep a copy on my frig. to read whenever I’m feeling that “Oh, they just don’t get it” feeling!
Kerry
August 22, 2008