The Importance of Maintaining Your Mental Health

A friend recently shared with me an article from The Guardian titled, “Is depression a kind of allergic reaction?” Depression and inflammation The gist of the article is that depression is a result of inflammation, which is caused by the immune system. It specifically pinpoints RA patients as being more likely to suffer from depression. This should come as no surprise that those of us with RA have higher rates of depression. Wouldn’t you if your life went from taking everyday tasks for granted to making them nearly impossible to complete? This is a chicken and egg thing. Am I depressed because I’m sick or am I sick because I’m depressed? To me, this line of thinking leads to victim-blaming. It puts the onus on the individual person. If only I could get happy… If only I cut out dairy and wheat out of my diet, I would feel so much better… Don’t get me wrong. I’m not saying that these things don’t work for some people. But I think it’s misleading to suggest that any one thing will be the sole cause of someone’s RA going into remission or even being cured. Environmental factors and autoimmune disorders Let’s not forget about environmental factors. And thankfully the collective of humans on earth, both those before us and those of us here now, are to blame. We can’t look at any one person and blame them singlehandedly for the environmental issues that exist today – and that I strongly believe do contribute to the rise in autoimmune-related disorders. But it is easy to blame individuals for their demeanor or outlook or way of life. The article also makes the point that there is a lot of stigma when it comes to depression – and that by viewing it as a physical disease – you remove that stigma. The article seems to be saying that if we just call depression RA, it will take all of the stigma away from depression. And basically seeks to put more on RA. RA stigma But what about the stigma that surrounds RA? What about the fact that to the average eye, RA is an invisible disease? What about the fact that most of the general public thinks RA is a disease of old people? How many in this community have been targeted for using handicapped spots by judge-y people who don’t see that they need them? This article almost suggests that only illnesses viewed as psychological have stigma, but not illnesses that are viewed as physical. And that’s absolutely not true in many cases, including RA. Unfortunately, the commenting on this article was closed, otherwise I would have provided my two cents. However, I went through every comment (over 700 of them) and only a few were from people that have RA. The rest were written by people with depression. The only reason I make that distinction is because I think many people support the view that there is a physiological cause to depression – and based on the title of the article, you wouldn’t necessarily assume that RA would be singled out. I definitely wouldn’t have ended up reading this article if a friend hadn’t sent it to me asking me my opinion about it. And my opinion is honestly not that favorable, which I would have happily shared if the commenting was still open. I particularly didn’t like the fact that RA was singled out, nor did I feel that there was an adequate explanation provided as to the complex processes that are involved with any illness – psychological, physiological, environmental, etc. Ultimately, do depression and inflammation have a connection? It’s possible. But to single out RA really rubs me the wrong way. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Living with Rheumatoid Arthritis is often a subtle masquerade of appearances: a smile when one is in pain, the forced buoyancy of energy when one is exhausted, the illusion of "all is well" when life feels in the balance, and the frequent utterings of hope when the future haunts like a tempest threatening. Appearances and reality are confused when social etiquette, politeness, tradition, and a certain unspoken disapproval of frankly discussing one's health permeate interaction and dialogue with others. "Just getting through it" is often a reality of rheumatoid arthritis when the pain, inflammation, and fatigue thrust their malicious claws into my life, permeating every minute with discomfort. At times I believe it is necessary to do so; how else will I get done what has to get done? How often, when I am alone or finally finished with the day, have I sat down, shoulders slumped, hands holding my face, and uttered under my breath the disappointment, frustration, and pain I actually feel? [native] A blend of reality and appearance, is life as I know it with RA. There are different ways to view this problem. One can, certainly, unapologetically discuss one's health, neither seeking pity nor support, but simply stating the facts. If someone else can't handle that, than that is their problem — health and life are inextricably intertwined, so let's not pretend. At the same time, in work and career situations, or in new social groups, treading carefully may be called for, and knowing how to navigate can help avoid frustration. I often see a misinformed current of popular belief that blames illness on the sufferer, as if all diseases were merely a matter of lifestyle and the chronically ill failed to live up to the requirements of health. Such naiveté is borne either from egoism, ignorance, or a deep fear that shuns the reality inherent in life. Perhaps it is a combination of factors and personality, I don't know. What I do know is that the view that the chronically ill are partially or even wholly responsible for their lot is more common than I would have believed before being diagnosed with rheumatoid arthritis. Certainly there are lifestyle risk factors to disease, but there are also genetic, social, environmental, and economic risk factors. One simply cannot view something like rheumatoid arthritis in a vacuum. Yet, in a vacuum I am often put when I tell the wrong person about RA. One need only hear a few responses along the lines of "just believe in the outcome you want and RA will go away," to realize that one inhabits a different world that makes communication with some people impossible. So what to make of reality and appearance? I believe it is important to never apologize for having rheumatoid arthritis. Likewise, I believe a populace educated about chronic diseases like RA is our best bet for better policy, insurance coverage, and public research funding for novel interventions, therefore I make every effort to educate others. At the same time, you cannot use logic and reason to persuade someone who holds unreasonable and illogical beliefs, therefore there are some people I avoid discussing RA with entirely. On a different end of the discussion, there is the fact that my life often requires me to keep moving, and to fulfill responsibilities whether I am in pain or not. I often simply choose to not voice the reality of a given day for my own psychological health of not dwelling incessantly on something negative that I cannot change. Add to that the fact that for me, the disease is episodic, and there are times when I feel good enough, am genuinely energetic and gregarious, and my passion that has been hampered while in pain, is unleashed in a flurry of activity. To the onlooker I may appear like I don't have rheumatoid arthritis at all. The reality is that the circumstance, time, observer, and the whims of the disease itself, can dictate what others see. Appearances can belie a harshness that is just out of sight, but felt and lived. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] When my immune system declared mutiny and began to throw the synovial lining of my joints overboard, I was in the final year of a Masters program in psychology. Like so many others suffering from RA, I seem to be riding a teeter-totter, with despair and depression on one end, and an endless striving to live at my best on the other. I have been surprised by the amount of helpful parallels I could make between my studies and my experience with the disease. One such application is called Cognitive Behavioral Therapy (CBT). CBT addresses how we think and behave, and how such thinking and behavior, when maladaptive, can mire us in emotional turmoil. Surely having RA leads to feelings of defeat and hopelessness. At the same time, I have found that concentrating on how I think about the disease helps me when I get stuck in dark places. One component of CBT is to identify informal logical fallacies in our thought process, known as cognitive misperceptions. These cognitive misperceptions appeal strongly to our emotions, often in painful ways. Though they are frequently invalid, sometimes they are accurate, which makes them informal rather than formal. I list below some of my own cognitive misperceptions that I have identified along the way, and provide a personal anecdote to demonstrate it. Slippery slope: This comes in the form of, “because of occurrence x, therefore occurrence y.” When I was first diagnosed, I spent a lot of time researching RA and what the future might hold for me. The picture I painted in my head was grim, and caused me much grief and fear. These feelings came in the form of, “Because I have RA (x), then all of these awful things must happen (y).” It took me a long time to see that probability was not certainty, and that I had many options that could mitigate some of these bad outcomes. This does not mean that my fear departed entirely, for there is legitimate reason to worry with a progressive disease. However, I stopped thinking in deterministic fashion, embraced the uncertainty, and found myself more hopeful. Illusion of Control: This comes in the form of a tendency to overestimate one’s degree of influence over external events. I want to feel like I have some control over the course of the illness. The reality is that my control is neither total nor totally absent. I can make healthy decisions, I can reduce stress, I can exercise, I can stretch, I can rest, and I can take medication. Nothing I do however can rid me of RA, nor do all of these things guarantee a symptom free life. On my more optimistic days I believe that everything I am doing is going to drive this into remission. This is an illusion of control. I must accept the harsh reality that my actions may not push the disease into remission. However, I am willing to take the chance, despite my limited control, and do the best I can. Illusory correlation: This comes in the form of inaccurately perceiving a relationship between two unrelated events. When I was first diagnosed, I went on a rampage to discover the cause. I scoured my life, searching for possible contributors like air pollution, certain medications I have taken, all of the surgeries I have had, the ingredients in foods I commonly eat, and so on. I then poured through the medical literature looking for studies that might verify my hypotheses. I was desperate for a cause to explain why my life had taken such a dreadful turn. I now accept that the cause is unknown. Abandoning the search has been liberating for me, and has freed me up to be more present with my family and my daily activities. Impact Bias: This comes in the form of a tendency to predict the future based on the impact of current feeling states. Every time I get a mild flare I think, “this will be gone in a few days.” If I am in a lot of pain, however, and the flare is bad, I think, "This is going to be here for a long time!" If I have had a few recent flares, with little down time, I think, “this is going to last forever!” These appraisals are biased by my immediate experience. The reality is that I simply do not know how long a flare will last. Some bad ones have cleared up fast, and some minor ones have stuck around for weeks. As I recognized this thinking pattern, I began to focus less on “how long will this last?” and more on “how can I best manage my life while this is going on?” Optimism bias/wishful thinking/positive outcome expectation: This comes in the form of a tendency to overestimate favorable and pleasant outcomes. For example: “I expected to quickly go into remission, and was deeply disappointed when I did not.” Pessimism bias: This comes in the form of a tendency to overestimate the likelihood of negative outcomes. I had a horrific experience on my first TNF inhibitor and methotrexate combination. My liver was not functioning properly, and I periodically broke out in hives. I had daily migraines, and my life was reduced to one miserable minute after another. My doctor took me off the medication, which ended the hives and migraines; however, she wanted me to try a different TNF inhibitor and go back on the methotrexate. I was pessimistically biased, and thought, “it is just going to be another round of abject misery.” It took a lot to convince me to give it another go. Thankfully it is working effectively enough, though I still have intermittent swelling, stiffness, and fatigue. Had I remained entrenched in my expectation of negative outcomes, I might not have tried this combination that has made my life more manageable. Selective perception: This comes in the form of a tendency for expectation to affect perception. When I decided to try the new drug combination, I was restlessly vigilant in watching for side effects. So much so that I might have bordered on hypochondria for a few days. Because I expected side effects, many times I began to perceive them when they were just normal bodily sensations. When I relaxed about the possible side effects of the new drug, I was less stressed overall, which surely helps with RA. Mood congruent memory: This comes in the form of a tendency to remember difficult times of the past during difficult times in the present, or vice versa, that the past is more favorable when the present is favorable. When the swelling, fatigue, and stiffness are bad, I remember the past as being just as bad, and it leads me to despair. However, when I am well, I remember the past as easier than it actually was. The unfortunate consequence of this thinking is that when I am down and remembering the past as brutal and difficult, I become more depressed. When I am up, I am naive, and hard days take me by surprise. If I can remind myself that my recollection is biased, and remember the past as filled with both good and bad times, I am more present regardless of how good or bad the day is. Rosy retrospection: This comes in the form of viewing the past as more pleasant than it was. We have RA; of course life was better before we had it! This fallacy is subtle though. I sometimes find myself remembering the past as this paradise I used to know, and now I am living in paradise lost. This is quite depressing. However, when I realistically remember how many tough times I had in the past even before RA, I often find myself thinking, “I’ve weathered a few storms already, I can get through this!” Though this is not an exhaustive list, I hope it shows how CBT can be applied to living with the disease. An exercise I found helpful is to write down what I am thinking when I feel depressed. I take a look at what I have written, and try to find contradictory evidence. I write that down as well. Often just seeing a more complete picture is helpful. What mental and emotional challenges exist for you, and what have you found helpful to cope? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"], Lately, I’ve been having some cranky days. I really do take seriously my emotional state and how it influences my rheumatoid arthritis. Perhaps it is silly, but I feel staying positive and tapping into joy is both a practice and a necessity for staying as healthy as possible. But what to do about the cranky train? I can’t tease apart this question: are my achy and stiff joints making me cranky or is my mood making them feel that way (or just worsening the usual)? The relationship between RA symptoms and mood I really used to be sure that it was my mood that affected my joints. But I am now less certain. I am feeling like this low-grade constant grind of my joints is eroding my mood and making me grouchier than I would like. RA pain brings down my energy and mood Popping more prednisone makes me feel better for a bit, but it is not a practical solution for the long term. Maybe meditation would be helpful here. I’m seeking a way to fend off how pain brings me down—not just my energy, but my mood. It feels like an anchor. I have less ability to connect with others, to have the capacity to reach out of my own pain. It takes away my patience. I don’t want to sit and listen to stories, ask questions about how other people are doing, participate in other lives. It feels isolating, but also exhausting. It’s a lack of energy for dealing with others that makes me short-tempered and my words sharper than I intend. [native] A cranky mood requires me to retreat for a bit I try to remind myself that crabby days are temporary. Tomorrow is another day. If I don’t feel great today, doesn’t mean that I won’t do better tomorrow. But I also need to retreat on these days. I can’t expect myself to socialize heavily, but instead should have some quiet time or rest. My husband is very understanding. On those days I may go to bed early or sit and read awhile. It can be harder on workdays, to muster the energy. Sometimes it feels like I am working hard to be civil and I feel bad about it because I enjoy my work and like my coworkers. A cranky mood is truly my RA speaking It’s hard to explain to others that sometimes when I am cranky or strident, it is truly the RA speaking. It’s not 100 percent my own voice, but the rigidity of achy joints talking. When I get these running pains down my forearms and throbbing in my wrists, I know it will be an especially challenging day for my mood and energy. A need to vocalize how RA pain affects my mood I think I need to be more vocal about my bad days, but I also just want to keep it to myself. I, at once, don’t want to be treated differently, yet also want understanding from others about how terrible I feel. It may not be possible to have both. And I feel bad about sharing how badly I feel. Sometimes I tell my husband, “It is an achy day” and I immediately worry that I have burdened him with a weight or knowledge that he can do nothing about. Does it help him to know or is it just spreading the pain unnecessarily? RA pain symptoms and mood are tied together In the end, I have to accept that my crankiness is both me and my RA. It is too entangled to extricate, though I don’t mind trying to blame the disease as a scapegoat! My achy joints eat away at my mood on bad days and that means both my RA and my attitude must be monitored and managed. I will keep practicing self-awareness and work on recognizing (and compensating) for my cranky joints. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] Findings from a recent study indicate that rheumatoid arthritis causes mood disorders. While mood shifts come as no surprise because we are battling pain, limitations, and sleep deprivation, it is a reminder to get our “mental health check-up” as part of our care. Rheumatoid arthritis and mental health According to the study, 23% of patients with RA experienced cognitive dysfunction with 16% related to depression. A third of patients had sleep-related issues. The lead researcher suggested that mental health issues stem from grappling with stress and chronic pain, with a recommendation that mental health evaluations should be a regular practice in caring for RA patients. Seeking emotional comfort with RA In my opinion, taking care of my mental health has been crucial for managing my RA. As a child, this was a huge issue because I was not equipped to handle such a huge issue. In retrospect, I wish that my doctor had offered mental health assessments and support to help me mature with my disease. A recent study agrees that RA patients want psychological support, but are usually not asked by their doctor. How I found support I was fortunate that I had a terrific support system in my family. But it was also incredibly helpful in my later high school years to see a counselor and talk about my experience with rheumatoid arthritis, resulting disabilities, and impact on my life. These sessions helped me to understand how RA altered not only my childhood but entire life, how I was and could continue to adapt, and negotiate future emotional challenges. RA changed my perspective RA has fundamentally changed how I think and approach life. I know for a fact that when I am achy, in more pain or feeling especially stiff, that it alters my thinking. On these days I have to practice patience and slow myself down so that I don’t make hasty decisions or misunderstand a situation. I remember one day a number of years ago that I purchased some silly item because a salesperson called during a flare-up day! I learned not to answer calls from strangers on bad RA days, because after I was feeling better I realized my mistake and had to cancel the order! For me, it’s not just my thinking, but my entire attitude can be influenced by RA—depression, anxiety, sleep deprivation, exhaustion. As many of you know, RA is an emotional rollercoaster! It’s possible to get caught on a wild ride and feel out of control! Managing RA and mental health Periodically, I seek to rebalance with the help of a psychologist. But there are other ways, such as taking time out for yourself, seeking support (or laughs) from friends and family, going on a relaxing vacation, or other mental-health supportive activities. Checking in with myself One thing I like about my current rheumatologist is that he always asks how I am, not just meaning my joints and RA symptoms, but my mental and emotional health. He asks about my work, my family, my fun. These things should be a part of the care conversation because they contribute to our health. If I can manage my RA, along with my mental health, then I am in a better place for the long term. Linking mental health, physical health & RA RA and mental health are inextricably entwined. While the disease attacks our joints, it also challenges our minds to maintain a positive outlook, enjoy our lives, and not lose ourselves in the chaos caused by the illness. Take the time to take care of your mind, and not just your body. Bring up mental health concerns with your doctor and seek out supports, such as therapy and medication. We are on a challenging journey and need to bolster ourselves along the way. Sometimes I worry too much about asking for mental or emotional support, but as research verifies, it is an important part of caring for RA. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

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Is It Me or My RA?

Failing Expectations

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No. 7 - Enjoy Your Life

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