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 …
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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.
I have suffered chronic illness for most of my life. One problem no one has mentioned here is — if you’re sick and don’t have health insurance because you work sporadically or part time. Unfortunately, we all don’t have spouses who can put us on their insurance. We are either marginalized to having to stop work and try to get SSI/SSD or go by the free health system. Every state doesn’t have that.When one goes on SSI/SSD route, life becomes abysmal. I’ve struggled for years, taking care of my health like that small child. But, if I get very much more sick, I’m in trouble!
I think Katrin’s comment about being heard–I mean, really heard–is so, so critical, and maybe responsible for even more than half the healing. But with major depression, it seems like (at least in my experience) we shut down and don’t have the energy and/or faith that anyone will hear where we are or what we need. I guess it’s true for any chronic illness, including depression…
My husband looks at me and says “what’s wrong?” and I have a routine–sometimes I try to smile and say “oh, nothing” because I’m sick of repeating myself–”my hips are killing me, my head hurts, I’m overwhelmed and I simply cannot understand why I’m even on the planet.” He’s heard it so many times, and I’m sick of hearing it myself. But then I shut down even more, which he feels, and that negatively affects our relationship, of course.
I just wanted to reiterate the importance of being heard, and recognize that it can be especially hard for someone battling depression, along with other chronic pain, to facilitate that communication.
I am a student at a University, but also a patient who lives with Chronic Illness. I have fibromyalgia, asthma, low-thyroid and high blood pressure, & osteoarthritis. Recently we moved from the north to AZ for better weather. It has helped me considerably. I like what you said about having a circle of support. As a student I have access to counselors to help me. If I get too depressed I can call on any of them for help. I am 55, so it is quite a challenge to go back to college, but I felt it was necessary to obtain a higher paying type of job. My school is online, so I don’t have to leave my home. It is a wonderful feeling to be able to do this, and I want to encourage other patients to go back to school. You are never too old to learn something new!
My friend has been suffering from a chronic degenerative autoimmune disorder with no established treatment protocol for the past 8 years. She has severe pain and fatigue caused by peripheral neuropathy. She spent the last year providing hospice care to her mother who recently passed away. She is now deeply depressed and despairing. She is struggling to make it through each day. I live far from her. What can I do?
Thankyou. Just reading your post this morning gave me an encouragement and hope for today. I think I had begun to lose sight of my dreams…I was letting the daily grind and pain overcome me…instead of me conquering it. I will. It may look different as I battle it, but in the end, it my CI will not win. I will. Thankyou for helping me see that a few adjustments here and there, a little acceptance, a little grieving…or alot, will help my attitude and outlook. One day at a time.