Monday, September 28, 2015

Re-Post: Chronic Illness and Depression

I don't often re-publish my old posts, but thought it may be time to put this one up again. I've had several recent conversations with folks (both autoimmune and otherwise) who have been struggling with symptoms of depression, and thought this post may be of some help and had some good links to solid information.

I wonder if the change of seasons precipitates increased depressive symptoms?

I was interested in the title of a recent review by the Cochrane Database of Systematic Reviews published on March 17th, 2010: Antidepressants Ease Depression in Physically Ill Patients. You can read a summary of it's findings here. The review concludes:

Based on their review, the authors recommend that antidepressants "be considered for the treatment of depression in physical illness. In the absence of data on comparative efficacy and acceptability in particular physical illnesses, choices of antidepressant should take account of patients' preferences, symptoms, and possible interactions with other medications."

I am a bit mystified by the necessity to encourage physicians to treat depression in patients struggling with a physical illness. It would seem obvious that a chronic illness and the resulting physical, emotional, financial, and lifestyle changes that accompany it could be a major factor in the development of depression. I would hope that most physicians would not need this prodding by the Cochrane group to view the symptoms of depression equally as important as the physical ailments in their clients.

Speaking from experience, I know firsthand about the benefits of the judicious use of SSRI antidepressants early on in the battle with chronic disease.

I came to my tenuous acceptance of chronic disease in stages, as I suspect that most of us do. In the year preceding my diagnosis, it seemed that all I really wanted was an answer to the question: What is making me feel like crap?? What?? What??? What????? I thought that no matter what it was, having a diagnosis in hand would eliminate my emotional distress, and to a certain extent that was true.

I remember sharing the news of my diagnosis with a friend. She expressed dismay and shock, but also disbelief as I said, "I'm lucky. It could be much much worse! I really am lucky." But I was sincere: I was so concerned that my problems were related to other, more incapacitating diseases. To realize that Sjs would be a life-long, yet not life-shortening disease seemed to be good news at the time.

My next phase in acceptance seemed to be defined by my motto : To win the war, know the enemy. I spent the year picking my doctor's brains, poring over rheumatology textbooks, reading online medical journals, and immersing myself completely in the cellular and pharmaceutical details of this disease. And although armed with valuable knowledge, I gradually came to the realization that this battle would last for my entire life.

With that realization, things changed.  It was a year after diagnosis, maybe a year and a half. By then, Dr. S. and I had established a solid patient/doctor relationship, I was relatively stable on a medication regime, I had a basic understanding of Sjogren's syndrome, I had made the decision to quit working, and life was beginning to settle into a new routine. The overwhelming reality of my situation slowly made itself clear - this is what my life is going to be like. Sjogren's is not going away.

After two years in which life was a flurry of doctor appointments, diagnostic tests, labwork, referral to a variety of specialist physicians, and more appointments, gradually everything just.......stopped. I found myself with enormous amounts of time on my hands. I had no idea what to do with myself. My life had been so busy for so long that I was at a total loss as to how to fill my days.

I tried to continue some of my favorite activities such as singing in a choir, but it soon became obvious that my vocal cords were just not what they were before autoimmune disease. I croaked my way through one concert while sweating profusely from the exertion of standing for a lengthy period of time, and afterwards reluctantly admitted that my enjoyment of music would have to be found in listening, not creating.

I tried to keep busy in the yard and garden, having always loved mowing, digging, weeding, planting and all the other activities outdoors, and soon realized my limitations in physical exertion and sun exposure.

The four walls of my house began to close in around me. I determined that if I were to spend more time indoors, well, then, the indoors had better be an attractive and tidy place to be. And discovered that scrubbing and vacuuming and dusting devoured enormous chunks of my limited amounts of energy.

At this point, I found myself just giving up. Being an all-or-nothing kind of person, it seemed to me that if I couldn't live my life the way I wanted it to be, I would.....I would....well, that was the part that I hadn't figured out. So I spent countless hours just staring at stupid television shows while moping around in sweatpants and ratty t-shirts. I mourned the loss of who I used to be. I remember feeling so overwhelmed and so sad. I would cry - and then become angry and frustrated because even my tears had changed due to Sjogren's.

John was so loving and so supportive during this time, which made me even more upset that I couldn't seem to get myself together. I had a good marriage, great kids, a caring circle of friends. People with that kind of support had no business feeling sorry for themselves, did they? And so I added guilt and shame to my already overloaded psyche.

Dr. S. was still seeing me every three months at this point, and during one of her office visits, she said, "How are you adjusting to all this?"

I didn't say a word. I didn't know what to say.

"Correct me if I'm wrong, but you seem pretty unhappy right now."

I told her that of course I was unhappy. I really didn't like autoimmune disease and I wanted it all to just go away.

She scooted closer to me, put her hand on my shoulder, looked me squarely in the eyes and said, "I can't heal you. Sjogren's doesn't just go away. We can manage it, but you need to come to some kind of acceptance with that."

Which prompted a major meltdown. Of course.

Dr. S. just kept handing me tissues until I finally got myself together, then suggested that I needed some help coming to terms with chronic illness. She was supportive, compassionate, and goal oriented, bless her. After more discussion and with my approval, we agreed on a plan of action: she prescribed an antidepressant for me and set up an appointment with a therapist. I left her office feeling as though an enormous weight had been lifted off my shoulders.

Thank goodness that Dr. S. was not one of those physicians that needed a reminder to treat depression in patients with physical illnesses!

I saw my therapist for about a year, during which we discussed coping mechanisms and strategies with which I could carve out a new and acceptable way of life. As I was slowly able to put some of these in place, I began to feel better. Much better. I began to see that even with Sjogren's syndrome, I was still Julia. A changed Julia, yes, but still basically Julia. With help, I was able to see that being Julia is not defined by autoimmune disease. I am Julia first, and a Sjoggie a distant second.

Over the following year, my therapist gradually tapered and then discontinued my SSRI antidepressants. I have an open-ended referral available to me if I ever feel the need to seek additional help.

Some days are still hard, of course. Some days I still mourn the loss of my old self, as anyone who has been reading Reasonably Well for any length of time knows. I'm so glad that the good days far outweigh the bad ones. And if I ever find myself heading down into that spiral of sadness again, I know that help is available for me. In this, I am fortunate.

If you are struggling with depression or an adjustment disorder as a result of chronic illness, talk to your doctor. If he/she has not initiated the discussion, begin it yourself.

You can read excellent discussions about the relationship between chronic disease and depression here, from Swedish Medical Centers in Seattle, WA, [9/28/15 Sorry. Link no longer works.] and here, from the Western Journal of Medicine.


Marion said...

Ouch! Boy did this one hit home. Still working it thru and expect I'll be doing so a long time. Kicking and screaming all the way. Unfortunately support systems are pretty much non-existent. Mostly it's suck it up and go walk the dog. Fortunately, she loves to go walkies.

Sjogrens Newbie said...

This is so where I am at the moment. Sorry - being a newbie - what's SSRI? Sjögren's syndrome something? Was glad to hear you say "life-long yet not life shortening" though! That's a relief. So anti depressants really made a difference for you? I'm scared of going down that road but think I might need it.

Concerned about the fact you had to quit your job. If I have to quit mine my world will fall apart - ie we will have to sell the house we have spent 15 years working towards and I don't think my husband will cope.

Do you all still take 'the pill'? I can't get a clear answer as to whether birth control hormones affect Sjogrens.

Does anyone get an odd aching back that eventually kinda links up with upper abdominal pain and then causes your whole torso to go into massive muscle spasms? What is that?!

Nicole said...

Hi Newbie,

Selective Serotonin Reuptake Inhibitor - it's a class of antidepressants.

Yes, I get an aching back/abdominal thing sometimes. I don't know what it is. Maybe gallstones? If so, mine have not been bad enough to send me to the doctor, but I'm highly doctor-resistant. ;) I suppose it could be a number of things. Probably good to ask your doc.

Hang in there!

Kate Stout said...

A good reminder. We hear so many stories about brave people who "overcome" or "battle" illnesses, that it's easy to forget that "coping with", and "accepting" illness are equally brave.

I've noticed a lot of people with Sjogren's are "doer" types - the multi tasking Type A sorts. Which makes letting go and finding a new way of doing things harder.

I loved my work, and when I had to let it go, it was hard. I worked with a therapist to find other things I valued, and came up with strategies to make sure these were a part of my life. It helped.

Anonymous said...

Hi, Marion,

Your comment really resonated with me. Not much in the way of a support system except for 2 cats. Would you be interested in an internet pal? Anne

Shara from Seattle said...

Thank you for your article. What I learned was whether you have the best support group in the world, as God has blessed you will Julie, I'n the case of acceptance, being alone isn't much of a factor to semi, inner peace. Your experience was so much like mine in a lot of ways. I'm still gonna hold on to the fantasy of being carried around like a child by a burly male nurse.

My mental health issue right now is that as bipolar, and ordinarily depressive, I'm being dragged under by an unrelenting, nagging group of little things my Sjogrens/RA has been doing to me lately. I think it started with the forest fires.

First the runny nose, gummy eyes, a trigger thumb for two weeks, recover from a biopsy, now it's an ear infection. I'm wiped out.I don't care. I want to be able to hibernate like a bear. Ha.

PC said...

My journey was much like yours, except I didn't have a spouse that was a soft place for me to fall and support me. It was a lonely and solitary experience in the beginning. I refused meds for depression, prior to being diagnosed, because like everyone else out there, my doctor said my ailments were stress related; after it was clear it was Sjogrens causing the depression then I used exercise to deal with depression and haven't looked back.
I don't judge anyone for taking meds temporarily or even long term if it helps them cope with their chronic illness; because, until I was "gifted" with a chronic illness I never really understood the journey.
Thank you always for posting uplifting and on point commentary.