Dr. Aletta first wrote this article in 2012. At the time there was little information that was easily accessible to the general public about the practical aspects of living with Chronic Illness and so Dr Aletta wrote several articles on her website about Chronic Illness.
Dr. Aletta has written several articles here are some that our readers have pointed out to be favorites.
We’d be remiss not to mention that Dr. Aletta has also written a book about Chronic Illness!
7 Rules For Living Well With Chronic Illness
If you or someone you know suffers from a Chronic Illness this book may help to navigate the in’s and outs of living well with Chronic Illness.
Sometimes there are articles that are hard to write but I know I have to. I can’t avoid it any longer. I have to write about my relapse. Since my twenties I’ve had this condition called nephrotic syndrome that is prone to relapse. (Later I was diagnosed with scleroderma, an auto-immune disease, a separate issue) Nephrotic syndrome is rare which makes it weird that I would get it at all. It’s not kidney failure. It’s a dysfunction of the kidneys that can turn ugly if not treated but it is treatable. I relapse, I take prednisone, my kidneys recover, I try to get off the prednisone. That’s the short story. The longer one is more painful and has its share of emotional distress. That’s the story that is hard to write.
My last relapse occurred about six years ago. It was very bad and lasted quite a while, but once recovered and off meds I had a nice long stretch of health and I took total advantage of it. Anyone who has experienced remission from a chronic illness or an acute life threatening condition knows the feeling. Like a saved sinner I gave thanks every day for my cherished health.
Last month I wrote about the stress I was under. A few weeks after that I noticed a telltale sign that the nephrotic syndrome had returned. Dr Elizabeth Kubler-Ross’s five stages of grief apply so well to my emotional response to relapse I decided to use them as an outline.
Six Stages of Grieving a Chronic Illness Relapse
Denial. The signs that I was relapsing were right in front of me but I kept telling myself, ‘Nah, I must be making this up. I feel fine.’ In the past I felt the symptoms of relapse before I saw the signs.
[I am hesitant to give you too much information, I don’t want to gross you out. Let me just explain in case you don’t know, that in diagnosing a medical condition there are ‘signs’ and there are ‘symptoms.’ Signs are those things that can be objectively observed by your doctor, and/or measured, like blood pressure, CAT scan film or lab reports. Symptoms are those abnormalities subjectively reported by the patient, like nausea or pain. Sadly in our Western culture signs are regarded more highly as “hard evidence.” Symptoms without signs can delegate a person to the “it’s all in your head” category, a special circle of hell many of us know too well.]
Usually I feel the symptom of pain before I see the sign of my kidneys releasing protein, the hallmark of nephrotic syndrome. This time was different. I saw the sign but chose not to believe it. Something else was causing the foamy urine. Soap in the toilet water, for instance. We tell ourselves all kinds of nonsense to deny the reality.
After a few days of pretending the signs weren’t there I bit the bullet and tested my urine which is easy to do with special litmus papers that measure the amount of protein in a sample. First I had to find my supply of uri strips, way in the back of a bathroom cabinet, dust off the bottle and test.
DAMN! Anger. First I cried. Then I got mad. And who was there to get mad at? Me, of course. I had done this horrible thing to myself. Me, who prides herself in good chronic illness management, let her life to go into stress overdrive. After six years I had allowed myself to get complacent about my health, something I promised myself I would never allow. Don’t we all feel bad when we break promises? Promises to ourselves especially. If I wasn’t a damned psychologist who frequently talks to people about the destructiveness of such negative self-talk I could get away with my anger, indulge in it a little even. But I couldn’t lie to myself. I did not have that kind of control or power. It was not my fault. And I had to deal with that.
So I did and then I got mad at the prednisone, which I hate. No one loves prednisone but we put up with it because too often it’s all we have. The side effects are psycho-maddening but I know I can’t live without it.
Anger bubbled like a cauldron over the prospect of being forced to deal, again, with intense corticosteroid nastiness. Weight gain! Damn! Insomnia, oh yeah. Autonomic nervous system in overdrive! Temper tantrums that by comparison make Linda Blair in the Exorcist look like Mother Theresa. Whoa, Nelly! Fasten your seat belts, it’s going to be a bumpy ride! Bargaining. Here’s where I thought I was being oh so clever. What if I took less prednisone than was prescribed to me? I bet if I took just one third less my kidneys would start to function and I’d be OK. Yeah, that would work. I don’t have to tell my doctor.
This is so shameful, that I would even think of playing with my prescription like that, when I advise my own patients so strongly against it. It just goes to show how it doesn’t matter if you are an expert. If you are the patient you should get out of your own way and just do what your trusted (key word here) medical professional tells you to do.
I wasted a week waiting for my kidneys to kick start back to function on less medication than I should have been taking. That was stupid but that’s bargaining, looking for the loop hole that proves that you are the exception. You just can’t believe that you have to follow the rules like everyone else.
Sorry kiddo, the Universe says, suck it up and take the medicine. Depression. Depression is kind of a misnomer for the completely normal lowering of mood we experience when we get bad news. In my popular article ‘5 Tips for Living Well With Chronic Illness’ I wrote:
“Here’s the thing about depression and chronic illness. It’s not depression if you are adjusting to a major loss. That’s called grief. Grief needs time to process. Allow yourself that time to mourn, to be angry and sad about what you’ve lost. You need time to accept the new reality.”
That’s pretty much how I felt for the first week or so after the relapse started. I let myself feel sad because I knew to do otherwise would not be fair to me. Acceptance. After processing though phases 1-4 I was ready to be open to the rest of the message from the Universe: “Accept. This relapse is relatively mild. Be thankful. Don’t waste energy fighting it. And slow down, baby, you’re moving too fast.”
Something about running into a brick wall can cause one to stop and reflect on what’s important in life. Things I had let slip or put off until I ‘had more time’ became priorities. My list was simple: Reconnect with your spirituality, meditate, play with your animals, stop to focus on what your teenage daughter is saying (and not saying), call your sisters, sit with your husband. Appreciate the small wonders. Be grateful for all and so much that is good in your life.
After reflection I offer a Step 6. Humility. I often hear people try to deny the importance of their personal problems by comparing theirs to other’s. This is not fair because every individual life has depth and meaning that no one else can appreciate, no one. What we can do, what I strive to do, is use my experience to nurture empathy and compassion. My relapse is a little thing compared to friends and patients living with the pain of progressive neurological disease, advancing cancer or chronic fatigue. And yet my experience informs me at a deeper level than chronically healthy people who have never known the emotional devastation that incurable illness can bring on.
In this I feel blessed.
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Dear Dr. A, This is so beautiful. Honest, raw, real, wise, touching, moving, and just plain beautiful. I’m glad you wrote this, even though I know how hard it must have been to write. It will speak to so many, as it does to me. Sending you my biggest, warmest wishes for comfort, healing and more blessings to come. – Maureen
Dear Maureen, Bless you, your words are a balm and make the effort completely worth it.
I’m sorry for your relapse, and I wish you strength, courage, and peace – three things I know are within you. And most of all, I wish you good health.
Dr. A – thanks so much for these brilliant and helpful reminders about grieving. It must seem sometimes that we humans are infinitely complex, yet predictable and even downright hilarious. I laughed and cried throughout this piece as I recognized many of my own ‘stages’ in living with heart disease.
These stages usually hit just when I’m feeling pretty darned smug about how well I’m “handling” everything in life, when I start to do more, sleep less, say YES when I mean NO. 🙂
I hope your health continues to improve day by day as you “appreciate the small wonders.”
I’m working on it, Carolyn! At least I am more aware until (as you say) I’m not. Silly us, learning the same lesson over and over. But at least we catch it a little sooner, correct a little better and regain our balance with more assurance. That is one big paradoxical gift our health struggles give us, isn’t it?
Hope you recover quickly. Take time for yourself!
Sharon and Nancy, Thank you so much for your well wishes. It means a lot to me. I pray you are all well and happy also. We can all use a dose of self-compassion and self-care. <3
Thank you for this article. I also have nephrotic syndrome, and you completely described how relapsing feels for me. I’ve had 2 in the last year and both were just like this, although the denial was longer in the first relapse. There’s also the constant questioning, in addition to any denial – I had a strange sense of paranoia before I had any symptoms or signs. Need to start trusting my gut, as well as my kidneys!
Your comment excited me so much! Finding another adult woman (I assume you are a woman, am I right?) with nephrotic syndrome is like finding a unicorn in my backyard! It is that rare! Hello, K, fellow nephrotic syndrome handler! Isn’t it one weird disease? Yes, you are right! We question ourselves all the time wondering if what we are feeling is really what’s going on. The strange paranoia you describe is an interesting symptom that sounds so familiar. We ‘know’ we’re having a relapse before I have proof and I agree, we need to trust that. Thank you so much for your comment to my article. It makes me proud you could identify with it.
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