Several years ago, when my father was diagnosed with cancer, one of the first things he said when he broke the news to me was “I feel like I am letting my family down.” When I suffered the miscarriage of our only child almost five years ago all I could think about was how I had let everyone down. And again, during my brief bout with breast cancer last year and all through my autoimmune problems of the past three years, I often had this sense of guilt. This crazy, irrational notion that I was to blame for my condition. I was heartbroken that my father would think such a thing, and reassured him, along with the rest of the family that it was simply not true. As a doctor once wrote in an article “You are not your blood pressure.” My father was not his cancer. And yet…I did the same thing to myself. And it is not uncommon.
One of my health care professionals who has been seeing me through this tangled web of illness mystery shed some light on this particular subject recently. Our society, for whatever reason, is sometimes set up to place blame on ourselves for being sick. Think about it. We get very few sick days in the average workplace if we get any at all and often those who come to work ill are praised for “toughing it out.” Never mind this just perpetuates the problem if the illness is contagious. We are frowned upon for having to stay home with our children when they are ill which lets face it, is often. We are bombarded daily with information on how to stay healthy so often that when we become sick or get a chronic illness we, and possibly others, are conditioned to find fault with the way we have been caring for ourselves. You could be a person who exercises regularly, sticks to an extremely healthy diet, avoids stress and still get nailed with something that is beyond your control. I encourage you to check this article out about RA as an example of how attitude toward illness, in this particular case arthritis, needs to change:http://www.the-rheumatologist.org/details/article/1311755/An_Identity_Crisis_for_RA.html#.TmP-ZXISPX0.facebook
And to add insult to injury, healthcare itself is available for a high-ticket price on our own that most of us cannot afford unless we are lucky enough to have employment that provides it; so thus, it is viewed often as a privilege anyway. A sort of “survival of the fittest” attitude if you will.
And then there is the guilt that comes with not being well enough to do your job or care for your family and having to put the stress even more on those you love to help pick up the slack and often take care of you. And even the extra things become hard. Those parties you used to throw? Impossible. Those social things you used to be able to do often? Forget it. Because not only is it terribly difficult to pull these things off, but also the thought of having to cancel on someone is just too much to bear. It just adds more stress to an already very stressful situation. So you stray from making too many plans because you know you could wake up that morning and as badly as you want to participate in something, your just not going to be able to make it. The thought of disappointing those you love just hurts too much. Hell, just thinking about picking up the phone to tell them can cause grief.
Last year when I was recovering from a double surgery and the recovery had some unexpected discomforts due to my illness to begin with, I simply started to cry to my Mom that I was sorry. She had been caring for me quite a lot and had her own life to live, and I simply felt that I was becoming a burden to her. She looked into my eyes and said “Please do not apologize for being sick. Never feel that way. Ok? You promise?” This meant a lot to me. And as time has passed, I have learned to stop feeling guilty for my condition. For one thing, it was only recently that I finally had the courage to admit to myself that yes, for lack of a better word, I was sick. Or I have a medical condition. Or I have an invisible illness. Or whatever you want to call it. Like I mentioned before there is more than one diagnosis going on so I am not going to rattle off titles. But the fact is…I am not “normal” in some ways. That is just the cold, hard fact. Pretending I could be, hiding from it, pushing myself through things was not working. It was far more liberating to come to the conclusion that I have this “thing” and it limits my lifestyle and well…love it or leave it! I realized, with the help of my health care professional that putting the burden of false guilt on me was an added stress that was only going to make me feel worse. So was pretending that I was ok when I was not. This is not to be confused with wanting sympathy or pity for what I have. Only that I am understood and validated. And to also realize that conditions vary. I have a good friend who suffered gravely from Lupus for three years before she started getting it under enough control to return to work and start exercising again. To look at her you would think there was nothing wrong right now. But she gets her flare-ups and setbacks. She has her weekends where she simply needs to stay on the sofa and relax to charge her batteries for a new week at work. And yet other times, she is up for going out on the weekends and feels pretty decent. So when someone says, “I have a friend with (fill in blank) and she takes (fill in blank) and does the following (fill in blank)” as if to say “if you only did this, you would not be suffering, etc.” I have to remind them that we are all different. His RA may be different from your RA. Her Fibromyalgia is not your Fibromyalgia.
A friend on Facebook reminded me the other day about the famous “Letter To Normals” by Claudia Marek . It is a good piece from her book and often helpful to those of us…who are not so normal…to try and explain where we are coming from. Although it is based on Fibromyalgia, I feel it can be helpful for anyone with a chronic condition. I encourage you to view it here:http://www.fibromyalgiatreatment.com/letter_to_normals.htm
On the flip side, we also want to still feel we can participate in life. We still want to care for our families, take vacations, and be asked for help. Maybe we cannot always say yes if you ask us to baby sit or have lunch. Maybe we have to be sure we do nothing and rest for an entire day so that the next day we can attend a concert or a wedding. Whatever it is, we are still who we are. We still have a lot to offer. We just need a little more patience. Pardon my illness. Or not.