Comments on: 5 Rules for Living with Chronic Illness and Depression: An Interview with Elvira Aletta

By: Susie

Susie — Mon, 29 Aug 2011 16:00:32 +0000

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.

By: John

John — Fri, 29 Jul 2011 10:51:12 +0000

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?

By: jesusonlygal

jesusonlygal — Wed, 08 Jun 2011 19:59:58 +0000

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!

By: Lee at TreatAllergy.com

Lee at TreatAllergy.com — Mon, 21 Feb 2011 18:05:43 +0000

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.

By: miastella

miastella — Sun, 04 Jul 2010 14:29:08 +0000

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!

By: Katrin

Katrin — Thu, 25 Jun 2009 23:46:18 +0000

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.

By: Elvira G. Aletta, Ph.D.

Elvira G. Aletta, Ph.D. — Thu, 25 Jun 2009 13:01:08 +0000

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

By: Katrin

Katrin — Thu, 25 Jun 2009 04:59:53 +0000

…and which is either that you cannot, or are not allowed to speak, never mind being heard, in your own truth. kat

By: Katrin

Katrin — Thu, 25 Jun 2009 04:46:59 +0000

I also believe that in many instances, ‘Depression’ is equal to ‘soul sickness’.

By: Katrin

Katrin — Thu, 25 Jun 2009 04:45:18 +0000

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.

By: Katrin

Katrin — Thu, 25 Jun 2009 04:39:50 +0000

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

By: Elvira G. Aletta, Ph.D.

Elvira G. Aletta, Ph.D. — Thu, 25 Jun 2009 03:02:34 +0000

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.

By: Elvira G. Aletta, Ph.D.

Elvira G. Aletta, Ph.D. — Thu, 25 Jun 2009 02:53:51 +0000

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

By: Glinda

Glinda — Wed, 24 Jun 2009 20:03:16 +0000

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.

By: Katrin

Katrin — Wed, 24 Jun 2009 19:27:34 +0000

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