I had a neuropsych evaluation last week. The specialist in Philly (“Dr. D”) wanted me to have a cognitive evaluation completed before I began the Imuran (immunosuppresive) as a baseline to see if there are any improvements after I’ve been on the meds for a while. I received the report from that evaluation on Monday. I’ll share more about the cognitive impacts of my autoimmune disease in my next post.
Today I want to talk about something else. He diagnosed me with Major Depressive Disorder. Here are the reasons he gave for this diagnosis: “The patient said that she had difficulty in accepting her functional losses. The patient said that she had experienced sadness, loss of pleasure in doing things that she used to enjoy, sense of helplessness, excessive worrying, anxiety, irritability and anger.”
Yes, those statements are correct. But they don’t come from being depressed. I don’t feel depressed. I have motivation. I have the desire to do things (including things I used to enjoy). I have ideas of projects I want to do. I do not feel in a depressed mood.
He never asked for any explanation for why I was feeling those things – he just asked yes or no questions. And I was fatigued and and I don’t process things as quickly as I used to (as evidenced by this cognitive evaluation), so I didn’t think that those questions would lead him to diagnosing me with depression and therefore didn’t think to explain my answers to those questions.
Yes, I have had trouble dealing with my functional losses. It’s hard to have things taken away from you. It’s hard to no longer be able to do things you once could. It’s hard to have these functional losses impact your family, friends and loved ones. Of course I have trouble dealing with those things. But just because something is a struggle doesn’t mean it depresses you. If everyone that had to deal with difficult changes in their lives were diagnosed as depressed simply because those changes made a large impact and they had to deal with the adjustment then pretty much everyone would have the diagnosis. I haven’t given up, remember – I wrote a post about the fact that I haven’t. That I’m still trying to get at least some of those things back.
Yes, I’ve experienced sadness. I don’t have the energy and “spoons” to do all the things I want to do – of course that would make me sad. If it didn’t then I’m pretty sure I wouldn’t be normal. But I don’t walk around with a sadness dark cloud over me all the time – I still don’t feel in a depressed mood because of this sadness.
Yes, I have loss of pleasure in things I used to enjoy. But it’s not because I’m depressed. It’s because THEY HURT! Holding a 5 pound camera makes my hands hurt. Making homemade cards makes my hands hurt. Sewing makes my hands hurt. Typing on the computer while developing applications makes my hands hurt. Dancing requires “spoons” that I can’t justify when I need those spoons for parenting, work, etc. Yes I have lost pleasure in these things I used to enjoy because they have become physically painful. Wouldn’t you lose pleasure in something if it became physically painful? It doesn’t mean I don’t want to continue doing those things – I very much would love to! I wish I could! I hope that I can if I ever get these pain symptoms managed. I haven’t lost interest and the love for doing those things – I’ve lost the pleasure in actually doing them simply because they are physically painful now.
Yes, I’ve had a sense of helplessness. I can no longer do things like cleaning and cooking for my family with the limited number of energy I have combined with pain factors. Yes, that makes me feel helpless (and guilty) but not depressed. Yes, I feel helpless in that I can’t find a way to get all these life-changing symptoms to stop (or even ease)…but again, I haven’t given up fighting for that – I’m still trying!
Worrying and anxiety. Yes, I’ve had those. As you’ve probably read in many posts on this blog. I worry that my health issues are causing negative impacts on my children and husband’s life. I’m worried that I’m not doing all that I’m capable of doing at work. I feel like those things are normal worries given my situation and circumstances. I don’t feel those qualify me for a depression diagnosis.
Irritability. Well, yes, I do get irritable. I’m in constant pain. If anyone was in constant pain they’d be a little more irritable and a little less patient than normal. Most people aren’t their most patient selves when they have the flu are they? Nope. Again, I think this is normal and expected for the situation and circumstances.
Anger. Yes, I’m angry at this disease. Not at people. Not at myself. I know that I didn’t ask for this. I know that no one did this to me. It is what it is and I’m angry at the disease – not at anyone (including myself) about it. I don’t walk around angry all the time. When it impacts my life in some immediate way (such as pain while taking pictures at the dance show) – I get angry at the disease for impacting me in these ways. But I don’t walk around as an angry person. I don’t explode or unleash on anyone. The anger doesn’t last long. It’s more of a “I hate this damn disease – stupid, stupid, disease.” That’s about the extent of the “anger.”
So, yes, I do exhibit those symptoms of depression. But each and every one of them is explainable in ways that I do not feel warrant a diagnosis of depression. Yes, this has all been a struggle to deal with. Yes, it’s been hard. Yes, I don’t get to do many of the things I’d love to be doing. But that doesn’t mean I don’t want to do those things. It doesn’t mean I don’t have ideas and motivation and interest. I just physically can’t do them or I know that if I do choose to do them then I won’t have enough energy left to do the necessities in life. I’m making practical choices, even if they aren’t fun choices.
And just like you can exhibit symptoms of a disease without having that disease, you can exhibit symptoms of depression without having depression. For example, I have hand pain. For 2 years that hand pain was mis-diagnosed as Rheumatoid Arthritis instead of the athralgia due to Sjogren’s Syndrome. In fact I had several symptoms of RA (fatigue, joint pain, high Rf levels, high sed rate levels) and that’s why I spent 2 years with that mis-diagnosis.
Yes, I have some symptoms of depression but depression is not the cause. Just like we needed to figure out they “why” of my autoimmune disease and look at more things in a big picture (we added in the symptoms of dry eyes and mouth as well as the results from blood tests from Sjogren’s), I think it’s important that doctors get below the symptoms of depression and figure out the “why” for those symptoms. In my case, I whole-heartedly believe they are not due to depression but rather normal reactions to the circumstances in my life at this moment.
I think anyone with chronic disease, chronic illness, chronic fatigue, chronic pain, etc., is going to display some of the symptoms of depression. And absolutely dealing with those life-changing chronic disease can cause depression – and it does for many people. And there’s nothing wrong with that.
Please do not take this post as I feel like being depressed is a bad or shameful thing – it’s absolutely not. There’s nothing wrong with it. There’s nothing shameful about it. It needs to be brought out into the light more than it is. It needs to be addressed and discussed far more than it is. Chronic disease can definitely lead people to experience depression. And I completely agree with this tweet from yesterday:
RT @MECFSSelfhelpGu: Never beat yourself up for feeling down, its totally acceptable! Resisting it can make it hang around longer. #spoonie
— Julie Ryan (@drunkitty2000) February 17, 2015
However, I think that when physicians are screening a chronic disease patient for depression they need to be especially careful to determine if the symptoms are due to depression or simply due to the situation the disease has placed the patient in (such as my hand pain being the reason that I don’t find pleasure in things I once did – not depression).
Just like medical doctors need to ensure they get all the facts and look at the larger picture when diagnosing a medical disease, mental health professionals need to look a the larger picture as well – could these symptoms be being caused by other things rather than the diagnosis I’m about to give.
Keep in mind that the checklist approach to assessing depression wouldn’t capture an obvious case of grief either, like the loss of a loved one. There are a number of psychiatrists who are trying to modify the protocol to ask some of the obvious precipitators of sadness and grief.
Glad to hear some professionals are working on looking at the why behind the checklist symptoms!