In the world of psychology, denial is considered a normal human response to information that may be overwhelming. Denial allows a person receiving bad news to take a break. It lets one hold off bad news – like a football player with his arm out to block a tackle. It offers one time to fortify personal defenses and prepare for an attack of bad news.
Denial is like the chain lock on a doorway. When bad news knocks, you can unlock the bolt and knob, but the chain lock allows you to see a stranger without opening the door all the way. Denial offers a small bit of protection and comfort. Of course, a really bad guy will simply kick down the door.
Many counseling models require a person to “move past denial”. In other words, in those models, progress cannot be made until denial is eliminated and one fully faces and embraces the overwhelming information.
In my world, a little denial is a good thing. I think of “willful denial” as the decision one makes to ignore bad things so one can get on with the good things.
I’m not talking about the irresponsible ignorance of important things like medical options, healthcare practices, the impact of MS on finances, relationship skills, etc. Willful denial never ignores reality when reality demands attention. Willful denial never chooses to discount medical reports. Willful denial never pretends MS isn’t real. Willful denial merely helps me enjoy time with my wife without focusing on the wrong things.
I believe willful denial is an acquired skill. It took a few years before I was able to accommodate the significant changes MS brought, is bringing and will bring. I imagine willful denial is probably a midpoint between initial diagnosis and when things become really bad, when reality bites the heart out of a caregiver.
I’ll share my use of willful denial related to three things: 1) information presented as facts, 2) what daily life presents as continuing trends in a disease process, and 3) what my mind tells me are probabilities for the future.
Search for a Cure
Willfully denying information presented as facts allows me to respond now without emotion to the statement, “there is no cure for MS”. That’s the “fact” that really made me angry. “Of course there’s a cure”, I thought, “they just haven’t found it. It will happen soon!” “What do you mean there’s no cure?!? A lifelong, degenerative neurological disorder without a cure! That ain’t right! Get busy, folks!”
I still believe a cure will be found. But I no longer believe it will happen soon. And when it does, I don’t believe a cure will repair damaged neurological tissue. I hope it does, but I think at best, the cure will simply stop the disease process. What I realize is that it isn’t my job to find the cure. Others will find a cure and I am so grateful for their efforts. It’s big science. Researchers with passion are pursuing a cure for Multiple Sclerosis and I cheer them onward wishing them Godspeed!
What I accept, though, is that whether or not MS will ever be “cured” means little in my daily life. After years of reading about every new or potential “cure”, I realized I can ignore that the search for a cure is even occurring. Focusing on the news of cures stirred too many cycles of hope followed by disappointment. I don’t have time for that because it distracts me from focusing on what I can do well: care for my wife.
Signs and Symptoms
Willful denial allows me to ignore what daily life presents as continuing signs of my wife’s disease process. I choose to see decline through a different window, I reframe daily life so that it is normal. That helps.
(Before I talk about how it helps to ignore slow, progressive decline, I caution you. Never ignore new symptoms. Anytime a new symptom appears, discuss it with the patient’s physician.)
Last night my wife and I went to the theater to see, “The Big Year”, a cute movie about three men who are competing to see the most birds in a single year. I was once a birder and really enjoyed the movie. My wife enjoyed it because it was cute. After one birding excursion when we were engaged, she declared she would never be a birder.
As the crowds scurried around us as we left the theater, moving at their normal, festive pace, I held my wife’s hand and we walked like a couple 40 years older than we are. Very slow. Stepping off a curb was a tedious process. Frustrating for both of us. I used a little willful denial and reframed it like this, “Yes. I hate that she can’t skip quickly with me to the car, but isn’t it nice to feel her hand in mine and enjoy this slow walk while everyone else is hurrying, missing the beautiful moon and cool breeze?”
It’s willful denial. But it makes the present pleasant.
Future Probabilities
One cannot live well without considering the future. And willful denial is not an excuse for not preparing for the future. If you are a caregiver who doesn’t prepare for the future, you are missing an important part of caregiving. Once you are prepared, though, except for an occasional check to see if additional preparations are needed, I think it’s possible to ignore concerns about the future and focus on the present.
Having done all I can do to prepare for the future, willful denial allows me to focus on the present by ignoring what I know are the probabilities the future holds. Instead of running each day through an ugly list of symptoms and experiences that I know are probably sitting out there in our future, I focus on today. This day. I deny that ugly future’s power over my daily operations. I willfully choose to ignore what I cannot control and enjoy today with my wife.
There are certainly times when denial is a bad thing. For example, if it kept me from facing reality with integrity and courage, denial would be bad. But when used willfully with awareness, a little denial allows me to focus on today and enjoy every good moment without fear of the future or pity for the present.
Thank you for the terrific article! It gives a name to a way of life that I have been learning from my girlfriend since we met 7 months ago. She is 54 years old and has been living with MS for over eight years now. Her first husband divorced her because he could not deal with her condition. She was very forthcoming with me about her condition from our first date. I found her positive attitude toward daily life absolutely fascinating, although somewhat confounding considering the long term prognosis she was facing. She is the most kind, loving, and caring person I have ever met. She has a great sense of humor. I have never been happier in my life, and have never felt more like I am where God would want me to be. We are now living together on a ranch in Texas. We spend most days tending to the cattle, riding horses, fishing, bird watching, and just generally enjoying life in the country. Every day is a blessing in its own way.
Her condition is progressing. Her eyesight is failing, and her legs are getting weaker. About twice a month, her legs go out completely, and she is in terrible pain for a day or two. Twice now she has lost all muscle control including speech. I know very little about MS, and don’t always understand her symptoms. I do feel overwhelmed and inadequate to handle the situations at times, but together, I have faith we can deal with whatever comes. We are preparing for the inevitable, but the temporary “willful denial” allows us to live every good day to the fullest. We know what is coming, but refuse to allow it to rob us of the present. It is possible to prepare without worry, and accept without fear.
Hello,
I wish I had a similar story as the one mentioned above. My other half has M.S and from the point of view of myself and my young daughter DENIAL has been the most evil thing we have had to deal with. Whilst I am all for doing what you can do and positive role models and all the rest of it, and I stress I am most emphatically NOT an over-protective person, my husband’s inability to face up to what has been happening to him, and most specifically a) ask for help from medical and support/counselling services and b) from his friends and family – has damaged our family terribly and constantly makes my caregiver role ten thousand times more difficult every day – I also believe it is in danger of damaging our daughter’s future.
It is definitely an unpredictable thing is M.S and whilst I believe it may be possible to remain in denial about these things if you are a single person, or without children – I don’t believe it is healthy if you do have children, simply because you need support systems in place in the event of – a relapse, for example. If you HAVE support systems in place and then do not need them then FINE and best case scenario – but if you down play your situation and negate it entirely saying you don’t need support or are not honest about what you can and can’t do, and you THEN experience a crisis – it is indeed TRULY A crisis for the entire family.
Anther aspect of the evil of this denial thing is as follows – it can be very isolating for family members who may see and feel the impact of fatigue – and the extra work and worry caused by it – for example in the evenings – or at home when noone else does. If the person with M.s is constantly asserting that certain things are ‘not a problem’ then extended family draw their own conclusions and generally get the impression that a spouse or caregiver is just a ‘difficult person’ or ‘making a fuss about nothing’. I think this is really an awful situation to be in. My other half for example has not wanted me to access caregiver support, cleaninng support, does not want me to learn to drive (and actively refuses to make encouraging remarks even though I’ve got a grant to learn from an M.S support organisation). I really think that this stuff needs to come out into the open. I believe denial is a devil and indeed there is an article entitled ‘the devil of denial’ which by a nun, I believe which describes exactly that.
This is my first time on this site, and I discovered this message. This is almost EXACTLY what I do… EXCEPT, we have not made the preparations, ie. a will, in case needed. My husband does not want to think about it most of the time. But I have been asked how I deal emotionally with everything, and I usually reply I just don’t think about it. We take life daily as it comes. The only concern is being unprepared for when/if he gets worse… And I do sometimes deal with the frustration of possible cure(s). Because I can not think of my life without him and I keep wishing and hoping. I believe that I need to put that hope in the Lord, and like you said and Greg too, not let it rob me of today. Easier said than done, but I think that will help me out, and him, in the long run to enjoy life.
Rick,
I just read your posting. Thank you. I am in a similar situation with my wife. I am so terrified and worried about the future that I cannot enjoy the time i have with my wife. I must try harder but I am so frightened and feel so alone – family and friends never ask how we are doing and the support and understanding is just not there – I continue to face caregiving alone…….ful of anger and resentment.
Does anyone have any ideas about what to do about my moms severe curvature in her back from scoliosis? All the doctor had to say was it was from sitting in her wheelchair all the time. Its really upsetting to see her uncomfortable and having to sit with her head hanging down to the left all the time latley! Plus is there any extra cushioning she could have on the wheelchair sit so she dosnt get as sore from sitting on it all day? Any ideas would be very helpful! Thanxs.