This is a BLOG written and created by Nikki Albert, who has chronic migraines with aura and fibromyalgia.
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There are a few reasons why people with chronic pain wear a facade of wellbeing or mask their pain from others. Some of those reasons involve defense mechanisms and other reasons are very functional coping methods. The facade is therefore both necessary and carries with it some problems if someone with chronic pain is not careful.
Be the mask
People with chronic pain understand that to a point wearing the facade helps be the facade. If you spend all your time focusing on your pain, talking about your pain, thinking about the pain then your life will be about the pain. Negativity within cultivates more negativity. It creates a heavy weight within and if in addition to the pain you must also deal with depression which means you are fighting twice the battle. Just as being around negative people who doubt your pain or cause you stress make your pain more difficult to deal with. Therefore if you cultivate a persona that is can laugh and smile, be positive and joke while in pain it will diminish the power of the pain. To some extent laughter is indeed the best medicine. You wear this facade in the work place and you smile, joke around and laugh. Eventually, a bit of that facade becomes you and slowly a bit of the stress of bearing all that pain at work is lessened by wearing that persona.
A mask for every place
Another reason to mask the pain and wear a facade is for pure practicality. When someone is working there is a certain expectation of how to behave and the mask serves that purpose. It is not that co-workers may not be sympathetic or that some might not even be aware of when you are in fact in a lot of pain, only that on a daily basis functionally it is practical to hide pain and discomfort in the workplace. Work is generally a necessity for most people even when their chronic pain condition is quite severe and in some cases it is quite welcome as a distraction. Distractions are a very useful chronic pain coping mechanism forcing the brain to focus on something other than the pain thus diminishing the awareness of it. Therefore work can be quite useful and preferable than not working at all with nothing to distract a person from their pain. Likewise the facade used to get through the work day is just another way to force a person not to brood and focus on the pain. It is not only hiding the pain from others but distancing from it themselves in order to function. It masks it from others, which is practical if you help customers directly or need to interact with people a great deal and it keeps a distance between the pain and yourself. However, this becomes difficult when the pain is severe or acute and then the facade itself breaks down, but for baseline pain levels the facade serves a purpose in every day life.
The family facade is put in place because of love. People do not want to see their loved ones suffer and therefore people with chronic pain understand it is painful to their family members to see that suffering all the time. They try to mask it when they can to ease the burden their family might carry from seeing them in pain and pain they cannot help with. Someone with chronic pain who is male and supporting a family may feel even more compelled to keep up a facade of wellbeing to show that he is fully capable of supporting his family, tolerating the pain and may deny that he may not be coping. To some extent people with chronic pain do express their level of pain with their spouse, or a symptom that is bothering them, or a bad pain day, but rarely to the depth that is truly felt and the real impact the pain is having on them. The 'realness' is what the facade hides. Can having a work facade and then a home facade be detrimental? Is it more stressful and tiring than shedding the work facade like a jacket at the end of the day and being free of it?
However, whether you mask you pain from your family or not they know you better than anyone and therefore they know your 'tells'. They know when your pain is bad and whether you have a facade or not it still affects them. It will affect each family different but it will affect your spouse and your children in different ways. Even your decreasing lifestyle, or career modifications affect them and their desires. How do your lack of long term goals and plans affect their outlook. How does seeing you suffer in extreme pain unable to hide it behind your mask affect them or just knowing you suffer all the time silently and they cannot help? It is not the same answer and it can be a complex answer but it is one that should be explored. The facade you use to protect your family from seeing your pain should not stop you from having open and honest conversations about your condition with them.
Many people who suffer with chronic pain often choose not to enter the dating world at all. They no not want another person to have to deal with their health conditions. They often think someone would not even want to. Nor do they want to pretend to be fine in the beginning of a relationship and they are not.
The plain and simple fact is some spouses of chronic pain people cannot handle being in that sort of relationship. They may handle by not handling it at all. While some significant others are just what someone with chronic pain does need. The right combination of sympathy and support. Nevertheless, it is stressful on the significant other. In the end it is not just you and your pain, it affects every aspect of your life and your relationships as well. It does not mean you have to work on a better facade, because that would be a lie and would get you nowhere but feeling more isolated from those you love. Acknowledge the impact there is and open communication about it.
Mask of steel
There is a defense mechanism aspect to masking the pain and putting on a facade of any sort. To some extend people with invisible disabilities believe they are perceived as weak, lazy and chronic complainers whether they are or not. Therefore, the facade is to literally present to the world someone who is strong and in control despite the pain. Granted, in a negative work environment when faced with a biased employer or co-workers there may be people who have those misconceptions of people with invisible disabilities. However, more often than not it is the guilt over what the person can no longer do or they think they should be able to do that plagues them or even guilt others add onto them. Therefore they project onto others that surely they to must believe they are not living up to societies expectations and are lazy and weak. They also assume people believe they are chronic complainers because their illness comes up in conversations so often when it is so much a part of their life and they feel no one really wants to hear any of that. So there is this aspect of 'show no weakness' facade in order to not feel the negativity of others or what the perceived negativity might be. However this defense mechanism assumes that is what people are thinking for one. It is also based on a lot of internal assumptions about what the chronic pain sufferer has to be. Therefore, it is maladaptive and it is better to confront the beliefs behind it rather than try to 'be strong' even when you might not feel so strong at all.
Facade as a barrier
That facade itself is not to blame for the feeling of isolation that comes with a chronic pain condition but it is a side effect. Because pain needs behavior indicators of some sort for another person to know someone is suffering if you hide them they cannot possibly know your pain. People with chronic pain excel at hiding their everyday baseline pain because that is normal to them. It is the more severe pain they may have difficulty with. Therefore, living day in and day out with this pain that no one can perceive that takes such an emotional and mental toll on them can be deeply frustrating and isolating. A lot of resentment can build up that people do not even seem to care that they are suffering so much. Or that people assume they are suddenly cured or perfectly fine on days they 'look good' or have the audacity to laugh as if it is inconceivable that someone can be in pain and look good or laugh. These are all problems of having an Invisible Disability, such as fibromyalgia and other chronic pain conditions, and this is why it is vital that in all aspects in life there is open communication to allow for more awareness to develop.
A mask is to be worn, not lived
In conclusion to some degree masking the pain and the facade of wellbeing are fundamental coping strategies, however we must be wary we are employing them too much. If we use them too much, hide too much, repress too much then we will resent others for not understanding, we will feel more and more isolated and it could lead to frustration, anger and depression. We need to be willing to communicate with all the people in our lives, in various degrees, to create a level of awareness. The fact is no matter how great we are at believing we are masking all our suffering, we are not. People close to us know all the signs we are incapable of hiding behind a facade or laughing off with a joke and a smile. Signs such as smiles becoming fixed, eyes glazed, attention distracted and the personality flat. When pain is acute it drains out all vibrancy and personality leaving someone appearing not themselves, which is very obvious to friends and family and often to co-workers as well. Facades take effort and even that becomes noticeable. Yet we fear letting the mask drop entirely to loved ones because underneath is a great deal of emotional strain, frustrations and suffering we do not want to worry our family with. Consider the facade to be a useful, functional tool to be utilized when you are out in the world and must mask your pain in order to blend and function. Keep in mind, it is not a facade you need to maintain at all times with family and friends; in the end, they see more than you think.
There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.
__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Tender or swollen lymph nodes (glands), especiall…
When people ask me how I am feeling 99% of the time I am lying. I often say 'not bad', because I feel it is slightly more honest than 'good' or 'fine'. Got sick of fine. Anyway, I lie for many reasons.
I'm having a good pain day: They happen and I'll say that I'm good, fine, not bad. I even feel like I can accomplish great things... in moderation. In which case, relatively speaking, for Me I am not actually lying. This is a Good pain day, it is Not Bad for me and I am Fine with it. I just don't want to explain: I just don't want to explain how crappy I feel and in which way I mean. Because I am tired of it. I just want to deal with it, without having to discuss it, mention it or have any sympathy expressed about it. Because it can be complicated. It may be a migraine with specific symptoms. Maybe it is a FM flare though. Or both. And then I have to explain what it is because most people think my migraines are the main issue but I could be FM…