Saturday, February 4, 2017

"Sick Upon Sick": Handling Sickness When You're Already Chronically Ill

Early on in our lives, we learn that being sick is no fun. When we're kids, being sick feels bad and it means we don't get to play or go to a birthday party. When we get a bit older, being sick becomes even more burdensome because it means we can't get our homework done or we have to miss work. But for me, it wasn't until I became a parent that being sick took on even greater significance.

As the mother of an infant, being sick meant that I wasn't sure I would be able to take care of my daughter. And that terrified me. I was already sleep deprived and feeling lost as to how I was supposed take care of a little human life. The addition of a fever or an infection made me realize that my own health felt like a secondary concern compared to what my other responsibilities were. I couldn't not feed my daughter just because I had a fever. She still needed me to change her diaper or put on her jacket.

And during periods of severe depression, the worry about how my own mental illness was affecting my daughter compounded the confusion, guilt, and anxiety I had always felt. 

For my mother, getting an additional illness on top of her chronic illness is hard to cope with. She calls it, "sick upon sick." I often wondered, how a person who already feels sick all the time feels when they are more sick. 

For people who are generally healthy, getting something like a cold can be an annoyance. But if you are already so sick that you can't leave your house, how does the effect of a cold or a fever impact you? 

Here are some questions I asked my mom about this.

Because of how limited you already are, do you worry about your current illness getting worse, or getting a new illness, or becoming injured?

It's not that I sit around and worry every day that something else will happen. But if you ask me and I think about it, I have to say that I do worry. Not so much about my original illness getting worse because it's been almost 16 years and so I feel as if it's settled into what it's going to be. But I do worry about the last two things you mentioned. 

And I did in fact get a serious additional illness, on top of the original one—breast cancer. I'd been chronically ill for 13 years when I was diagnosed and it's become an ongoing additional health issue for me. The medications I've been given to prevent a re-occurrence have side effects that I have a lot of trouble with, and we think it may be because of my preexisting illness. In fact, one of the side-effects is that the medication exacerbates the symptoms of that illness. So yeah, it's been hard.

I also worry that something will happen and I'll have to be hospitalized. Part of my concern about that comes from reading other people's experiences about how doctors and other hospital staff seem not to understand that a person can be very sick but look fine. So I have a plan that if I'm ever hospitalized, I'll have the doctors get in touch with my primary care doctor so that he can explain my illness and how it might impact or be impacted by various treatments. Actually, this is what my primary doctor told me to do since many people in the medical profession don't understand Chronic Fatigue Syndrome (now called Myalgic Encephalomyelitis or ME/CFS).

When I got breast cancer, the doctors and medical staff were fantastic except for one thing. Only one of them acted as if my chronic illness was relevant. It was the anesthesiologist, and he asked me a bunch of questions about it but only because he happened to know someone who has ME/CFS.

At some point you broke your ankle. How did you handle that?

Ah, yes, that was my experience with an injury being a kind of "sick upon sick." I write about it in my first book, How to Be Sick. My husband was out of town, so I was on my own. If I hadn't already been sick, I would have gone to the doctor right away. Instead, after I tripped down the step and knew something was terribly wrong with my ankle, I crawled to my bed, pulled my laptop over, and looked on the internet. It said that if I couldn't walk on it the next day it was probably broken. So I waited and spent the day crawling everywhere I needed to go.

When I couldn't walk on it the next morning, I called a friend. He took me to my doctor who had me get an x-ray and then put a cast on it. The healing was a lengthy process. My doctor arranged for a physical therapist to come to the house for several weeks. He also wanted me to see an orthopedist so I had to do that. He ordered his own set of x-rays and then put on a different kind of cast. 

The whole experience was way outside the zone of what I'm comfortably able to do, given my chronic illness. So although it was only a broken ankle, it exacerbated the ME/CFS for weeks. So yeah, that was an injury that made my chronic illness worse because it forced me to be more active than I'm able to be. 

What's the worst thing about being "sick upon sick"?

When I think of "sick upon sick," I tend to think about a cold or the flu, not something like breast cancer. I'll answer your question based on those first two—what I call acute illnesses. The worst thing about getting an acute illness is the effect it has on my sleep. The single most important thing that determines how I'm going to feel on any given day is how well I slept the night before. I can sleep well and still feel lousy, but if I sleep poorly, I always have a rough day ahead of me. When I'm sick upon sick, like most people, I don't sleep well. For someone who's otherwise healthy, it's no big deal. But for me, it makes my ongoing illness worse.

A close second to sleep is the emotional impact. It's hard enough feeling sick all the time, so having an acute illness is like a second blow. I have to remind myself to use the practices I teach other people—that everything is impermanent and will pass, like the a rain storm; that I still have blessings to count; that life always has it's ups and downs and this is simply one of those downs. Those kind of things.

Oh, there's one other thing and that's that often the medications I'm given for something acute can exacerbate the ME/CFS. That's tough. For example, I suffer from chronic bladder infections. When they come on, it's terribly painful until the antibiotics start to work. I do have a prescribed pain medication I can take, but it makes my chronic illness much worse for some reason. So there's always this dilemma that medications that help with an acute illness may make my chronic illness worse.

What advice would you give people who have become "sick upon sick"? 

I would advise them to remember that healthy people come down with colds and the flu too. It's not reasonable to expect that because you already have a chronic illness, you won't get something on top of it. So, don't think of yourself as having been singled out for bad treatment in life. Illness—and injuries too—are a natural part of the human life cycle. So, recognize that and don't blame yourself for what's happened.

I'd also say that if you get an acute illness, pamper yourself. The law of impermanence will be your friend here, because the acute illness will go away. In the meantime be as nice to yourself as you can.

Have you ever worried that an acute illness will turn into a chronic one? 

I have but, you know, some people who are healthy have told me that they worry about that too. When an acute illness makes my chronic illness worse, I do sometimes worry that I won't get back to what I call my baseline; but I always have. Even though that baseline isn't very high, it's still my baseline. It's what I've come to know and accept.

Is there anything positive you can think of about being "sick upon sick"?

It's hard to think of positive things. There is this crazy positive thing that some doctors have mentioned. We think my chronic illness is caused by an immune system dysfunction of some kind—that my immune system is upregulated, meaning that it's overactive. And so, there's always this hope that some kind of traumatic event to my health could reset my immune system—like restarting a computer. Unfortunately, doctors don't know how to do that with the immune system. My doctor and I joke about it sometimes, but we're actually serious. We even shared that both of us were hoping that maybe the radiation I got for the breast cancer would re-set my immune system. It didn't. But I guess this shows that there's a potential positive aspect to everything.

When you've recovered from an acute illness do you ever think, "Wow, I'm not as sick as I could be"? That would be a positive.

I guess that does happen. It certainly happened with the breast cancer. It took me nine months to recover from the six weeks of radiation treatment. It gave me extra fatigue to the point where I was having trouble functioning. So when that extra fatigue cleared up, I did feel relieved not to be as sick as I could be—to be more like my "old sick self" as I sometimes call it.

This doesn't directly relate to your question about an acute illness, but I do hear from people who say that they're glad they became chronically ill because it forced them to live a more relaxed and slow lifestyle. But I hear from just as many people who feel trapped and miserable due to pain and illness. It's nice to know, though, that there are some people who have found positives in it.

I tend to say to myself, "This isn't what I chose and I wish I weren't sick, but I'm going to make the best of it because this is the life I have."


  1. I love the "sick upon sick" and acute illness terms. I have been wanting to ask you both a question and now is the perfect time. In the past four years, I have had approximately five sick- upon- sick incidents. After each time, I have noticed my health condition declines and I don't recover back to where I was prior to the additional illness. Has anyone else experienced this? Thanks

  2. Hi Joyce. I can only tell you about my personal experience. Whenever I've had a medical episode (for e.g. the radiation I talk about in the piece), it can take a long time -- even months -- to return to my baseline but, so far (cross my fingers), I've always eventually gotten back to that baseline. I'm sorry to hear that your overall health seems to decline when you get an acute illness. It must be so frustrating. All my best to you. Toni

  3. I had to laugh at your comment re the possibility of illness 're- starting' your immune system! My son and I had that same conversation tonight. I've just had my first cold in 8 years and I too wondered if that meant my immune system was relaxing and I was on the mend! Watch this space!
    I too have a diagnosis of ME/CFS and whilst I can't say I've enjoyed having a cold I have enjoyed having something wrong with me that people have been able to
    relate to ~ how bizarre is that?

    1. I understand completely Helen -- enjoying that you have something wrong that people can relate to. As for the immune system, among the many medical people I've seen was an acupuncturist. Like you, I rarely get a cold (which supports the overactive immune system theory). Well, I got a cold and the acupuncturist said "There's an old saying. You have to be well enough to get a cold." Bizarre as that sounded, it gave me hope...but, alas, it wasn't to be. All my best, Toni

    2. Thank you Toni ~ if this morning is anything to go by then I think I may well be joining the 'alas not to be club' ...... hey ho.....thanks for all you share ~ Helen

  4. Such a great read, thank you. I can totally relate. I am "sick upon sick" right now & struggling. Like you with ME and cancer. I worry about my next surgery because I'm so exhausted right now. I do think chronic illness has taught me resilience. Yes, I'm physically a wreck but mentally I'm quite tough. This is what got me through the last surgery. It's a juggling act to keep my head above water & I do find I have less patience with non-chronic illness folk when they just get sick. "Sick upon sick" feels like wading through quicksand. Thanks so much for writing this.