Fibromyalgia and Grief

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Episode 33 - Fibromyalgia & Grief  and the 5 psychological stages that may lead to acceptance and action.
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In this episode,  I discuss how we and our human brains deal with a chronic illness; how to support each other in this journey from both the perspectives of the patient and their close relationships.

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Transcript

Episode 33. Grief and Illness and the psychological stages that may lead to acceptance and action.

Recently a slew of new patients who were all 18 years old either came to me as new patients or were transferred from a local pediatric rheumatology office. Most of my patients are over 18 years old, and having so many young patients join my practice has been out of the norm.

When patients are young and have a recent diagnosis of a new condition that has the potential to affect their life, I see them having more emotions and feelings and reacting more visibly than someone who is older and more mature. Perhaps, when we are young, everything feels more intense, more massive, and more permanent. So, although I was thinking about my younger patients when I was recording this episode, this would be a good episode to examine your thoughts about your illness as well as stages of grief as it applies to the processing of having a chronic condition and how it can lead you to healing.

You see, going through the stages of grief can happen as a result of any significant life change. Per the Grief Recovery Method definition, "Grief is the conflicting feelings caused by the end of or change in a familiar pattern of behavior." Grief is an experience that can completely consume you mentally, physically, and emotionally — and it doesn't just happen with the traditional sense of loss, like when someone you love dies. For many recently diagnosed, chronically ill, or disabled people, grieving the loss of your health after a new medical diagnosis is an often unrecognized reality. One of the problems we face is that we are taught how to get or acquire things in life but not how to deal with losing them, including losing our health. We may not even be aware of the cycles we go through emotionally, and the type of grief that comes with an illness is complex, as the cycles may repeat as a new health challenge or social consequence arises.

You may hear from your family or friends that you "need to be strong" to get through this experience. You may take from this that you need to hide their feelings on some level. But hiding your feelings does not remove them; dealing with them becomes more complicated.

So, today, I use as a guide, the 5 stages of grief, developed by the Swiss-American psychiatrist Elizabeth Kubler-Ross, a pioneer in near-death studies and author of the internationally best-selling book, On Death and Dying. The five stages of grief model (or the Kübler-Ross model) is popularly known as a model that describes a series of emotions experienced by grieving people: denial, anger, bargaining, depression, and acceptance. In actuality, the Kübler-Ross model was based on people who are dying rather than grieving. Now, some may think this model is outdated and unhelpful, and even the author herself admitted that the stages are not a linear and predictable progression. I will try to use this model to help us examine your thoughts about your chronic condition and to be more aware of your thoughts and feelings. You absolutely don't have to go through these stages at all or in order, and my goal is to start a conversation, not to label. You see, all these stages are based on thoughts, what you think, creating feelings that lead to actions or inactions that produce results. We can always trace our results to our thoughts. So, narrowing down, grouping your thoughts into categories using the five stages of grief model as a rough guide, and examining where, if at all, you may be in your journey. 

The 1st stage is denial: a refusal to accept what is happening. Sometimes this stage is also called disbelief. Denial is the act of rejecting reality, and I see it often in my clinic in various scenarios. It may manifest as not accepting the diagnosis or just part of it, doubting the results or questioning the plan of action or treatment, denying the impact the condition may produce on your health, well-being, or life, or not being compliant with treatment because of the denial. It may happen before the diagnosis or even before seeing the doctor when some symptoms arise, but you may be telling yourself that it's "all in your head," or the symptom is not real or not "that bad," or "I can't believe this is happening."

In the case of fibromyalgia, it could be due to feelings of confusion. Having a diagnosis but also hearing from others that fibro is not real, or refusing to believe the severity of the symptoms you are experiencing are not due to some other, "more acceptable," diagnosis. Or after spending time believing that you have another condition like lupus or something else, just to be diagnosed with fibro, not accepting the new reality. Or keep looking for better, more acceptable treatment options.

During this phase, your mind tries to protect you from emotional pain and does so the best it knows how. I often see denial more dramatically in men. Women tend to argue with reality more, while men often outright deny reality. I used to work for the veteran's hospital's emergency department. Many veterans would wait until the last minute to be seen, being literally dragged by their families to see a doctor. I had a patient who convinced himself his left shoulder pain was from lifting weights, although he had not worked out in months and had no known injury, and he just barely avoided a deadly heart attack if it wasn't for his daughter, who brought him to ER. When my highly educated and intelligent father found a lump in his armpit, he told himself for many months that it was the result of the flu, nothing to worry about, waiting for it to resolve on its own. He avoided thinking and talking about it and did not share this concerning finding with his doctor, his wife, or me until months later, thus delaying his cancer diagnosis. He told me later that the fear of the diagnosis was overpowering and paralyzing, and it was easier to live in denial, pretending it was not real and the lump was not a big deal. 

 So, you too may be in denial as a way to cope with your emotions, fear, or anxiety, for example. You too may be downplaying the severity of the situation, rejecting your true feelings, ignoring symptoms or pain, pushing through life like nothing is happening, doubting yourself and your intuition, or hiding symptoms from family and doctors. Be kind to yourself. It is the best you know how to cope or know what to do. Your brain, by using the thoughts, is trying to protect you from emotional pain.

But, let's apply a cognitive model to examine what you can do if you find yourself in this stage. 1st is awareness – say, you think you are in denial. Examine your thoughts with love and compassion. If you're able, allow yourself time to process the facts of the situation. You may write them down, do a thought download – write all your thoughts down, free flow, and look at them with curiosity. Which ones are facts – you have seen a doctor on August 10th, for example, I was given a specific diagnosis XYZ, I have pain today in a such and such joint. Now, these would be facts. The are many other sentences that are likely your thoughts, your opinion, interpretation, or analysis. These are often not factual but feel very real. You can also look at your thoughts and decide on the type of denial – do you deny a fact, the impact, hope, or accountability? These types of denial would have a different feeling and produce a different action and result. If you deny the existence of a condition or symptom vs. how the condition that you accept would impact you and your life. Denial that there is hope is huge. Some people have given up before they get all the facts. It can be in the form of not getting a test because if the result is positive, nothing can be done; why do that test anyway? It may be in the form of refusing to acknowledge the lack of willingness to do the work to improve the situation. "that's just the way I am." or "why bother? It's a loss anyway". Denial of accountability – an attempt to avoid responsibility for an action or inaction that produced results. For example, a patient may have diabetes but consumes a lot of sugar; his hemoglobin A1c reflects the lifestyle changes he has yet to make.  

The next phase or another strong emotion you may experience is anger. Anger is the most common response to fear. If you were ever separated from your child, say in a store, and for the few moments you were frantically looking for her, you likely are overwhelmed with fear. Fear that the child was kidnapped, as we hear on the television, probably pops immediately into your mind. When the child is located, most likely, there is a lot of anger, yelling, and reprimanding that is driven by the overwhelming feeling of anger at the mere possibility of losing a child. The parents are experiencing a sense of grief over what might have happened.

Remember, anger is a common reaction to things that scare you. There are many things you can be scared about or angry about. There might be an element of fear about how the future will be different than the one that was originally planned. This fear may be displayed in anger. I see more anger in my young patients – they did not imagine getting sick right before college, taking medications that may affect fertility, getting overweight and puffy looking from the steroids, or being told to be careful with exposures due to their immunocompromised immune system. You may be angry and frustrated at the healthcare cost or cost of opportunity as you had to change jobs or file for a disability. We often feel anger when something is not fair. You have well-meaning friends, and family tell you what they should or shouldn't be feeling – like you should feel angry, why don't you?? You may be angry at your friends, who tell you all the things you could have had instead of your condition; who tell you to be grateful, not angry!

The best way you can help yourself in dealing with your loss, no matter the situation, is to create a plan of action on how to move through the many conflicting feelings which you might be experiencing, rather than focusing on just one, which may or may not have any bearing on your situation. Again, go back to your cognitive model, and look at the circumstances that created your thoughts. These thoughts create many feelings, maybe anger or any other feeling you may experience. That feeling will generate an action or inaction. If you don't like the actions you take, trace them back to the feelings and thoughts you were having about the circumstance.

Based on the Kübler-Ross model, the next phase of grief is negotiation or bargaining. Though this isn't the same as denial, in which you're trying to refuse reality, this stage might feel similar because you may be thinking of all the ways that the situation could have gone differently. This is the shoulda-woulda-coulda stage. When it's delivered not by another but yourself, this well-known word grouping is intimately tied to the emotion of regret. And who hasn't experienced regret over things they've said or done in the past—or, for that matter, didn't do? Regret is a natural response to any type of loss. What if I had done something differently - diet, exercise, medicine, therapy, surgery, etc.? What if I got into the specialist sooner? It can naturally lead also into what you would do, promising something, like being a better person or drinking more water, if the situation goes away. In a perfect world, no one would have regrets! We would think with perfect clarity before we ever spoke or took any kind of action. The problem is that no one lives in a perfect world. Regret is associated with memories of our personal history linked with our imagining what might have created a better outcome if we had done the past differently.

The reality is that you are exactly where you need to be because you are here now. We can't change our past; we can't live in the future. Regret and beating yourself up does not serve you. It does not propel you into useful action, except for the actions of rumination, imagining a different outcome, or telling yourself, "I never seem to make the right decisions," or "I always choose the wrong thing for me." If regret has become debilitating for you and is not spurring you to improve but rather feels like the small mirror you are constantly checking behind you, maybe it's time to let go of the regrettable experiences and move on to something new. As Oprah Winfrey said, "Whatever has happened to you in your past has no power over this present moment, because life is now."

The next stage is depression, feeling like giving up and not caring what happens. If you search the word "depression" on the internet, one of the first things you will encounter is "clinical depression." Grief is the normal and natural reaction to any change in our lives. It's a normal reaction, not a mental illness. However, you may not understand this distinction and may self-diagnose yourself as clinically depressed on some level. But also, patients with chronic illnesses, especially chronic pain, have higher rates of clinical depression.  

Clinical studies have revealed that chronic pain, as a stress state, often induces depression and that up to 85% of patients with chronic pain are affected by severe depression.

So, while every significant life change brings its elements of grief, most people have little or no training in dealing with loss. Some of your friends will respond to you with cliche-ridden advice about keeping busy or suggestions on why you should not feel sad. These suggestions may seem logical, but grief is hardly logical. It is emotional. No amount of logic can truly overcome emotional pain. It can be hard to advocate for your needs when you're in this stage of grief. You might feel it's pointless to keep searching for a diagnosis or treatment. You might find yourself wishing that all of these problems would just go away.

But I also want to point out that pain and depression are closely related. Depression can cause pain — and pain can cause depression. Sometimes pain and depression create a vicious cycle in which pain worsens symptoms of depression, and then the resulting depression worsens feelings of pain. In general, the worse the painful physical symptoms, the more severe the depression. Living with daily pain is physically and emotionally stressful. Chronic stress changes the levels of stress hormones and neurochemicals found within your brain and nervous system; these can affect your mood, thinking, and behavior. Your thoughts could be going between regret and loss of hope. So, even though this may be a stage of grief and temporary, I urge you to seek professional help; it could be your primary care to do a proper screening for depression symptoms. Depression often requires additional services, such as counseling or therapy. Just to remind you that no matter where your symptoms stem from — whether physical, emotional, mental, or behavioral condition — they're valid, and you are worthy of getting the treatment you need.

The last stage is Acceptance, coming to terms with the situation, and being ready to move forward. Acceptance means fully acknowledging the facts of a problem and not fixating on how it shouldn't be that way. This is a mindset shift. You shift from the judgment of yourself, regret, guilt, or feeling of unfairness toward your condition. Acceptance is closely linked with the concept of mindfulness. To accept one's circumstances, feelings, and thoughts, one must be fully aware of them. Some people have a hard time accepting situations because they feel as though acceptance is the same thing as being in agreement with what happened or saying that it is OK. In other cases, people don't want to acknowledge the pain that would come with acceptance. Acceptance in human psychology is a person's assent to the reality of a situation, recognizing a process or condition, often a negative or uncomfortable situation, without attempting to change it or protest it. Acceptance does not mean liking, wanting, choosing, or supporting. No one is suggesting you like, want, or support whatever it is that you're accepting. But we create additional suffering by struggling against the pain—by resisting and rejecting it. 

Now, accepting a condition does not mean you give up treatment or stop looking for the best outcome; it does not mean giving up. It is accepting that your condition is a circumstance in life, and you can choose how you want to think about it. You see, circumstances are neutral facts. They just exist. Our human brain adds interpretation to these circumstances, adding our story and details to them. We can choose any thoughts we want to think about circumstances. We don't have to choose the thoughts that don't serve us or add to our suffering. Fibromyalgia is a neutral circumstance. Rheumatoid arthritis is a neutral circumstance. COVID is a neutral circumstance. Any medical condition or a life event are neutral circumstances. Our thoughts about it create feelings about it that lead us to actions or inactions. So, acceptance is just an acknowledgment that a condition is a neutral circumstance. 

Acceptance and awareness are the initial stages of change we need to have in order to start progress toward our goals. We need to be aware of our thinking in order to change the pattern of thinking that does not serve us. We need to accept that life is full of circumstances, many of which suck and are painful, but when we choose additional painful thoughts or actions, we add to our suffering.  And that we have control how and what we choose to think about it, and what we desire as a result of our actions, how we choose to manage our conditions. So start working on choosing the thoughts that serve you! 

Thank you for listening; I'll see you next week!