I've pondered this post for a long while, not wanting to appear whining or complaining, yet knowing that I'll need to draw, in part, from my own experiences and that it could come off that way. I don't mean it to. That's not what I do.
But in recent weeks, my chronic disease, bronchiectasis combined with asthma and a dangerously compromised immune system, has become more challenging. I'm learning a lot about living with chronic illness that I suspect could be useful to those who have family or friends that have one too. So, I thought I'd share a few observations.
What is "chronic illness"?
Without going all medical, it's basically an illness or ailment (think chronic back pain) that cannot be cured, just managed. Chronic fatigue syndrome, asthma, arthritis, Chron's disease, Coeliac disease, MS, Parkinson's, depression, persistent pain, autoimmune diseases or acne, are some -- there are lots of others. Wikipedia (not the best medical source but good for the basics) lists diabetes, irregular heart, high blood pressure and cholesterol, COPD, even some forms of cancer. It didn't list sleep apnea as one, but I would.
Also (according to Wikipedia) "The World Health Organization (WHO) reports chronic non-communicable conditions to be by far the leading cause of mortality in the world, representing 35 million deaths in 2005 and over 60% of all deaths.
In other words, taking more vitamin C won't cure it. Won't hurt. Won't help much.
A lot of us have chronic disease or medical issues and don't really realize it (probably most of us!). We think it's just the way we are. And it is. But sometimes it is more aggressive or obvious than others. There can be a lot of gray area and a lot of deep water to wade through. Sometimes it's pretty tough to deal with.
What does "managed" mean?
Certain medicine or treatments may alleviate pain or symptoms, but the disease or condition doesn't disappear. You're not cured, just in better control. I don't like to be "managed." Even by Gypsy, who tries his best! When it comes to certain things, I'm a serious control freak. I pick my battles wisely, but in many things, and certainly in terms of my physical and emotional self, I like to be in control.
People with Chronic Illness aren't always in control.
By this, I mean that if you have a chronic illness, you can't depend on yourself to be at your best for a big day out or have appropriate or not-annoying behavior in public. For example, I cough uncontrollably. Scares people. Scares me. Not the best behavior in a concert, say, or at a lecture or meeting. Those with arthritis may not be able to open a jar or package or do a craft like knitting as easily as others. Others require insulin or other medications to maintain their balance.
You can take your meds, do all the right things. But you can't control the illness without external assistance. For those of us like me who prefer to be in control of our own lives, this is difficult. It wears you down, and sometimes you can't control your emotions.
(We'll talk emotional control, in a minute!)
People with Chronic Illness are often tired.
Some chronic issues do not affect sleep. Others do. In my case, I might cough so much I can't get to sleep for several hours after I've gone to bed and I may wake up in the night with the coughing. Rick is a saint and Gypsy is an angel. Let's just say that you don't want to be my roommate. The next morning it is almost impossible to get going.
But for those with sleep apnea or chronic fatigue, or those who have persistent back pain, for example, sleep can also be affected. And it's not just that you don't get enough sleep -- it's that when one operates without sufficient sleep, it can affect mood, reflexes (which can impair tasks like driving), ability to perform work tasks as well as when you're at the top of your game, or even the ability to work at all.
People with Chronic Illness are often embarrassed.
It depends on the illness, but for folks like me who have something that is obvious, it can be embarrassing. Believe me, when I cough, which is frequently, people know I'm around. It's gross. I'm not contagious. But I sound like I have the flu. More than once I've been in an enclosed elevator and people just shrink away -- if they could crawl into the wall, they would.
I was a theatre major. I know how to act and I do it every day. I performed on stage and I love doing TV when I can and speaking gigs are one of my favorite parts of my job. I don't mind being the center of attention when the attention isn't on my health. When it is, I'm the one who just wants to melt into the wall.
People who have Chronic Illness (or at least some) will work as hard as they possibly can. Maybe to their detriment.
Well, maybe that's just me. But I don't think so. We want to show people that we can be productive, do things as well or better than anyone else. We're not going to let a little old health problem get us down. We're not slackers or shirking a job or a task. Sometimes that means not taking as good care as we should. People tell us to let go of things. We ignore them. That's not good, but it's what we do. (Well, it's what I do.) I'm working on that.
People who have Chronic Illness can be fragile emotionally -- more than they show.
When you never know just what 'episode' or physical event is going to kick you into a bad place, it can be scary. You try not to think of the friend who died too young -- or in my case, my father's story, which has some parallels to mine. I always understood much (not all) of the nature of my dad's physical illness, but it wasn't until many years into my own that I realized the terrible emotional toll it took on him. Feeling broken and out of control. He was prickly, and now I fully understand why.
It may not be one thing that breaks you down, but the collective accumulation of little things -- personal loss, workplace issues, a fender bender, the death of a friend or concern about a pet. My problems getting helpful information from the doc's office had me completely flattened. Almost everyone gets overwhelmed when lots of unpleasant things happen or stress is increased. Everyone. But when you're physically challenged, that emotional stress seems to hit in a more visible way. Many Chronic Illnesses can't be seen. Therefore, people think you are just fine. Just terribly weepy. (I truly believe in my case, my emotions are far more fragile than my health.)
Sometimes that's OK and just what you want. Sometimes, it isn't. When you break your leg or have a body part replaced or get shingles all over your face, everyone knows and is maybe a little more willing to cut you a break, lend a hand. When you have something that isn't so visible -- and there are a lot of those -- it's pretty easy to forget that person might need some TLC. (I am very blessed that most of the folks around me "get it." That's not the case for everyone.
What Do We Need?
That's probably the biggest question I'm asked -- What do you need? How can I help? There really isn't a good answer.
Sometimes I'd like to say "cut me some slack," but the truth is, the one I should be telling that to is myself. Understanding if I withdraw is helpful. Sometimes it's just too much effort to pick up a phone and call someone, partly because I have to talk (without coughing if possible), partly because I want to be engaged in the conversation and sometimes I just can't be.
We had dinner with dear friends the other night, a semi-regular Friday night gig. I was so tired I could hardly communicate, yet it meant so much to be with people I loved. After I touched base with a number of people about what is going on with me medically and its implications to my life, my friend sent a note and said "I could tell something was wrong, but decided not to ask," respecting my the darker world of my silence.
Ironically, she is one of the people I could tell openly because of our friendship and because she understands. In her note, this strong cancer survivor said "There's a lot I could say from my own body/health experiences, but I think that would take away from just being with you/hearing you in this moment." I can't tell you what that meant.
Don't undermine my confidence in my health care professionals.
It's all right to suggest a second opinion or share something relevant. But accept my choices.
Understand that for any of us, every day (or at least some of them) can be a physical challenge. Whether it is movement because of pain, being ever mindful of protecting ourselves with the appropriate medications, staying awake, keeping odd hours (because we stayed awake when we would have liked to have slept) or dozens of other things, we sometimes feel like every day is climbing a mountain.
It's important to have confidence in the professionals who are helping us walk through our path to wellness. I do my research, I have people I can ask, just to make sure things seem "right." If you see something that seems terribly wrong, make sure you say something. But don't destroy my confidence in the people who are helping me most.
The Power of Positive Thinking
I often take a lot of good humored flack for being one of the most half-full, optimistic and positive people around, trying to look at problems as opportunities. For years, I've tried to spread the word that we can't always change the things around us that bother us, but we can change the way we approach them or let them go. I really do believe that. I have tried for years to look at the half-full of illness, which is wellness and the part of me that is well.
But understand that sometimes we have to face up to the realities and until we do, we can't shift the attitude to treating the problem as an opportunity. I'm a big believer of visualization as a powerful technique to heal and enrich so much of our lives. Everyone has their own thing and it might not be yours. But accept it. Just as you accept when they become overwhelmed.
I am recently reminded that Steve Jobs delayed surgery in favor of alternative treatments that weren't as effective. This will vary for everyone based on their personal beliefs, but I believe strongly in facing up to the medical realities and working with a good team, while not overlooking the additional benefits of complementary alternative therapies.
That won't work for everyone, but it is worth remembering that the mind is a powerful part of our operating equipment. How we use it matters.
Lots of love helps!
When I posted something on Facebook about some bad news, I was overwhelmed with the kindness of people who replied. Overwhelmed to tears. Support is so valuable.
And on that note, I want to thank my blogger buddies who have often been a lifeline of friends I've never met (for the most part!). You're the best. Of course, you don't have to listen to me cough day after day. But somehow, I think you'd understand!
Friends are the best. Period. They are our angels. Our lifelines. I am grateful to each and every one of mine, as well as to Rick, my office colleagues and my family. You see, it's for people like all of these that we really want to be at our best. Speaking personally, you are my motivation and you matter more than you know.
NOTE: All these pix are mine (as usual) except for that lovely one of the bridge on the Seine, which is by my Parisian friend Jerry. Thanks, Jerr!
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