Today I have the pleasure of interviewing one of my favorite therapists, Elvira Aletta, Ph.D., on a very important topic: chronic illness. I say important, because it now pertains to me (and thus is important), and I need to learn some coping techniques ASAP before I fall over, into the Big Black Hole of depression.
Dr. Aletta is a clinical psychologist, wife, mom to two teenagers and blogger, seeking the balance in upstate New York. She is working on a book “How to Have A Chronic Illness So It Doesn’t Have You,” and would love to hear your story about how you or someone you love thrives with chronic illness. Write to her at draletta@explorewhatsnext.com. To learn more about Dr. Aletta, check out explorewhatsnext.com.
Question: I know that you have dealt with chronic illness personally and professionally, and this is an area of specialty for you. Do you have five good rules for living with both chronic illness and depression?
Dr. Aletta: Yes, I’ve had my share of chronic illness. In my early twenties I was diagnosed with nephrotic syndrome, a rare kidney disease that usually affects young boys. Weird. Then in my thirties I came down with scleroderma. Never heard of that either. When we are young it is our God given right to take our health for granted. Chronic illness means getting sick and being told it’s not going away, and that stinks. Our bodies have suddenly freaked out on us and we’ve lost control of the one thing we thought we could count on.
It’s not depression if you are adjusting to a major loss. That’s grief, which 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.
Then at some point, we need to take action. If we don’t, grief morphs into depression and that can make your physical illness worse.
Be aware that one or a combination of factors can cause lowered mood when you have a chronic illness:
- The situation. Loss. Grief.
- Changes in appearance, mobility, independence.
- The illness itself may have depression as a symptom.
- Pain and fatigue.
- Side effects of medication and other treatments.
- Social pressure to appear OK, especially hard if there’s no diagnosis.
My five good rules to deal with it all? OK, here we go…
1. Be confident you have the right doctor.
When you have CI your relationship with your doctor is second only to your spouse or your parents. Being honest (and you must be honest!) with that person means you need to be able to trust them to hear you. If you don’t have that kind of relationship get a second opinion. Shop around. In my CI career I fired three highly recommended specialists because they were jerks. Thankfully I’ve also had wonderful physicians who literally saved my life and my mind.
2. Define your circle of support carefully.
Isolation leads to depression and it is so easy to isolate when you feel lower then dirt. People may surprise you. Peripheral friends may step up and be terrific support while others you thought you could count on cave. If someone inside the circle asks, “How are you?” Tell them the truth. When someone outside the circle asks, lie, say, “I’m fine” and change the subject. Too often they can’t handle the truth and they suck any energy you have taking care of them. A patient of mine found her mother would get hysterical at any medical news so it was better to keep her at arms length.
If someone asks if they can help say yes. Accepting help is a gift to them. Trust that someday you will be on the giving end. My patient’s mother could do laundry for her and that made both of them happy. One big way someone can help is to go to doctor’s visits with you. The extra eyes and ears take the pressure off you when the news is emotionally laden and important, even if the news is good.
3. Protect your health as you would a small child.
You are more than your illness. That part of you that functions well needs you to advocate for it. Of course there are the basics of getting plenty of sleep, exercise and eating smart. In addition to all that I suggest learning a new set of signals that are your clues for when you’re wearing your health thin. For me it’s lowered ability to concentrate, tension in my neck and shoulders, irritability and loss of my usually dependable sense of humor. When those yellow lights are blinking, it’s time for me to stop, assess and make changes. When I ignored those signals I relapsed and looking back I can see where I ran the red lights. So be a fierce protector of your health. Set limits and find the courage to say ‘No’!
4. Create a new measuring stick.
Our self-esteem lies in the standards with which we measure ourselves as we go through life. To thrive with chronic illness, throw out the old and rethink your standards. If you are used to defining yourself by your 50-hour workweek, for instance, you may feel lousy about yourself because now you can’t manage it.
Finding a new standard can be tough. One technique I use with patients is to have them ask themselves what is reasonable? Is it reasonable to do it all yourself or is it more reasonable to delegate? Is it reasonable to register the kids in travel hockey or is it more reasonable to stay local? This is where a lot of courage is needed. Courage to address old pressures to be a certain way and to imagine value in doing things differently. In my own life and in my work I find that those who thrive despite chronic illness creatively find opportunity in their new reality.
5. Have dreams and strive for them!
You had ambitions to get a degree or promotion, to see the world or save it, to get married and have kids. Now you’re thinking, do I have to give that up? No, you don’t. It’s imperative for your spirit that you have goals for living, big and small.
What might change with the reality of chronic illness is the path and timing. I wanted to have kids and was told for years, ‘No.’ I had to adjust to the idea of life without kids or adopting. Then in my late thirties, my doctor said, go for it. After a scary, thrilling journey, today I have two thriving teenagers.
As we reach for the stars let’s appreciate the ground we stand on. Mindfulness has a real place in keeping depression at bay for everyone. Sometimes our dreams are right before our eyes.
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SportLife » 5 Rules for Living with Chronic Illness and Depression: An Interview with Elvira Aletta (6/16/2009)
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16 Comments to
“5 Rules for Living with Chronic Illness and Depression: An Interview with Elvira Aletta”
Very good points here. With fibro and and bipolar for 10+ years, I’ve worn out anyone able or willing to help.
Lowering my goals has helped a lot. Doing two loads of wash may well be my energy expenditure for the day. I want to do more but have to remember that it is OK to stretch projects out, sometimes for weeks.
I’m glad I found this site.
How do you “fire” a doctor. Is it simply going to another doctor, or is it with an explanation before leaving? Craziest thing is that I’ve had to shop around for docs a lot. My medical records are like everywhere. Sometimes, the offices simply cannot manage sending copies of records….. Drives me mad. I’ve had doctors who were not only jerks, but also inconsiderate of my needs in terms of communication. I am deaf and need the doc to speak slowly and clearly so I can speech-read them, and I am quite upfront about my needs. And some even think a person with a myriad of problems are simply cuckoo……..
Donia raises a good question when he asks how to fire a doctor. Not only that, but I am incapable of going around shopping for doctors and this is not due to a chronic illness.
I just can’t do it. So, one time I did find this doctor whom I really liked. He was covering for my regular physician who was out of the country then for several months. I had never met him before. It was way past his time to go home and after waiting for a very long time, he finally came in and I told him that all my problems just went away and that I was fine and leaving. He in turn gave me a sincere , and really wonderful lecture about what it means to be a physician. ( it was really reassuring and I stayed) So, he took this really long time with me and finally I thought we were done, and the office had already closed at least an hour before. And then he asks me this. “Is there anything else on your mind, or any other concern you have that you want to tell me about?” I just could not believe him asking this, I really couldn’t.
So what did I answer him? I thought for a minute and then told him that actually there was something else I was worried about, and that was that I was almost sure I had breast cancer, and I told him how it had started and my symptoms, etc. So we started over again and examined me after asking if I was sure that was what I wanted and I said yes. (I told him it was very visible) When he was done he said that yes, he also thought I had breast cancer, to the point of being sure about this, and then it all started again, the referrals mammogram, breast surgeon, ultrasound, etc, etc..and yes, I had a serious case of IBC (Inflammatory breast cancer) But has he not asked that question, i would have never mentioned it. But then I had to come back the next day and I asked him if he would be my doctor. i told him that there was nothing wrong with my other doctor but that I felt much more comfortable with him. (Actually, I did have problems with the other one, and this is because I had…well, anyway, it’s a long story..PTSD..and I was not popular with physicians for a few years. (but I always had been before and have long since then been again, and they really like me) But those few years the stuff these people wrote in my charts was so negative, and she read all this, and we started off badly, and she didn’t even take anything I said seriously. In the past, and especially since I have lived with a bunch of chronic illnesses, my doctors had trusted me, so if i said I had a sinus infection and needed an antibiotic, they would give it to me. With this new one, (not the one I saw for the first time but the one who was gone for some time) I would say I have a sinus infection and just because I said this she would say I did not. It was as if I was already dismissed before i even arrived. But to just quickly finish, when I asked this new doctor if could switch to him he said no, and that it was unethical.
At 17 I got insulin dependent Diabetes; I did not mind. I thought it was an opportunity for me to change my life style and I never grieved. But there is a lot more to tell..I cannot say this all here and now. My thyroid stopped working after I had my first son, and with him I had toxemia. Then I had such things that complicated matters such as an eating disorder, but that finally retreated when I became a mother. Since the cancer I have gotten new chronic illnesses that I have never even heard off, and I am a nurse. Osteonecrosis..my femur dying, Dupryen’s? something contracture with trigger finger, which is chronic and just had surgery for it?
I actually feel better emotionally when I am sick, and the cancer diagnosis was no big deal, and actually a great healing experience after a huge trauma that I had and which lasted for years and felt like combat and where I was totally alone with this and blamed …anyway It almost felt, that since I could not get help and I could not communicate, and nobody believed me and everyone hated me…it felt like this was my chance to get treated for those monsters and the abuse, and which had turned into cancer. That this condition was so bad that it took mutilating, poisoning and burning to get it healed, and yes, it did help a lot.
I think I have talked quite enough, and I hope it’s OK to push the submit button.
I will not edit what I wrote, because I am just not willing to reread what I wrote but you can flush my comment down the drain, i don’t mind.
Thanks for the article. kat
PS: I also started late, in my thirties, and I also have two teenagers. It has not been easy for them, either, with all my illness.
A very common-sensical interview! The advice can also be appropriate for caregivers of the chronically ill: we are struggling with issues of grief and insufficient support circles as well. I hope Elvira’s book addresses the issue of caregiver depression as well. thank you!
Thanks to you all for your inspiring comments. Donia: How do you fire a doctor? Simply by not scheduling more appointments. You do not owe anyone an explanation unless you feel compelled by the nature of your particular relationship to provide feedback. In that case write it in a thoughtful letter. In the same letter you can request copies of your medical records or at a minimum a medical summary that you can keep for your records.
Dear Elvira, if I was a doctor, and author of this article, I would have responded back to me with at least an acknowledgment. (I mean, I said a lot, and quite personal stuff, so it would be nice to know that you were heard.) Kat
A timely and helpful article, for sure. I have been in the throes of chronic illness (central nervous system related) for several years, but I avoided getting treatment because I had two consecutive “very bad doctors” who made me feel small and stupid.
When I finally did go to see a specialist, she told me that she requires her patients see a therapist to address the behaviors and attitudes that can exacerbate chronic illness. She also believes that the life changes that need to happen in the face of chronic illness will happen more smoothly with the guidance of a professional. I was afraid she was thinking that my chronic pain and other symptoms were all in my head, but no; the doc believes that learning about mindfulness, emotional self-care, and the grieving process should be addressed sooner rather than later.
I want the treatment to to address my sypmtoms so I can continue on in a life I enjoyed and managed well. I do not want to change my life to accomodate the illness. I was told that this is a common reaction to chronic illness and it is part of the process of change and loss. Sigh. I hope I can learn to be a good and obedient sick person, but at the moment, I’m just really sad.
Dear Katrin,
Of course. I fully intended to respond to your comment. I try to respond to everyone. Your particular comment was so full I wanted to take some time to reflect.
It is heartbreaking that the one doctor who listened to you couldn’t continue to see you. In all your history, with all the pain (emotional as well as physical), what comes through to me is your fighting spirit. You are brave enough to find healing in your battle with cancer, a kind of purging by fire, that you survived and won. I can identify with the feeling, although my experience was not as complicated or dire as yours. ‘That which does not kill us makes us stronger,’ was probably first said by someone with chronic illness.
Thank you for your comment. I hope your kids have learned from your tenacity and know their Mom is a fighter.
Yours,
Dr. Aletta
Dear Dan, Your ability to adapt is commendable. I hope you will someday reframe ‘lowering my goals’ to simply ‘changing’ them. You still have standards they’re just different, more reasonable.
Dear Anne, I just checked out your blog at caregiverland http://www.manzanamarketing.com/caregiverland/. How fabulous! I will visit again and link it to my blog. Yes I fully intend to have a companion work that addresses the challenges for family, spouses & friends who love someone with chronic illness. Thanks so much for the encouragement.
Thank you! You mention somewhere, (and since I read the other article as well, I am not sure where you say it), just how difficult it is when your illness remains undiagnosed. So with the cancer I was lucky, and the loving care and attention I received was honestly more ‘good’ than having the cancer itself was ‘bad’.
It doesn’t matter if it’s physical or emotional, or both, it’s the being heard and acknowledged that is perhaps much more than half of the healing.
When I had the osteonecrosis, and which is at the moment pretty asymptomatic, but was at first the most painful thing I ever had in my life, physically. First they did an x-ray and that came out negative. (meaning, nothing is wrong for those who are not familiar with the medical language) Then I had an ultrasound which was also negative. for both tests I received a note from the nurse that told that nothing was there along with a smiley face.
I called the nurse and told her that I had nothing to feel happy about and that I certainly did not feel happy about the results. that I knew something was seriously wrong and that the right test had just not been performed. She then asked me, and this question came from the female doctor who by then was still unsure if I could be taken seriously, to give her one reason why she should perform more tests in addition to the two they had already done. Well, i told her what I said above and that there was not a ‘maybe’ about this just because they thought the negative results indicated a happy face for a depressed patient. So I had first the bone scan and then MRI as a result of my answer, and then a diagnosis. And the world changed from that moment on. I received narcotics which I really needed, and a referral to an orthopedist, and more than anything, this diagnosis changed my relationship with this doctor. since then, she trusts me, and i now have a caring, brand new doctor in her.
But until then, the patient is usually not only not believed, but blamed? kat
PS: Another good thing about cancer is, from my experience at least, that it does not hurt your soul. To me, injury to the soul hurts more than anything else.
I also believe that in many instances, ‘Depression’ is equal to ’soul sickness’.
…and which is either that you cannot, or are not allowed to speak, never mind being heard, in your own truth. kat
Dear Kat,
Yes, in the undiagnosed stage this disbelief from all parties happens often. Even I wondered if I were making my symptoms up until another attack hit me and it was clear again that something was really wrong. Being tenacious is necessary but draining, as you describe. It’s tough to be a broken record without letting our frustration and anger alienate the very people we are dependent on to help us.
Dr. A
So very true. And I think the doctor who cannot find a diagnosis feels helpless, also, and for that reason tends to blame the patient eventually.
And like always, there are these chronic patients who are drug addicts, hypochondriacs, etc…..and on, and on.
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