Denial. How it hurts everyone!

Denial, it is basically a lie we tell ourselves. Now some lies are small and harmless while others impact us in a big way. When it comes to dealing with disabilities, denial can be one of the most hurtful things we do to ourselves and our loved ones. 

Not Enough Help vs Too Much Coddling:

Denial of a disability can normally be broken down into two flavors. In the “Not Enough Help” scenario, it is either the person them self or people around them minimizing the effect of the disability or downright pretending it doesn’t exist. In my brother’s early years, my parents had a choice of sending him to a “regular” high school or enrolling him into a school that caters to only teenagers with significant mental/physical disabilities. My parent’s at the time were in denial of the extent of my brother’s developmental disability. Thus, he went to high school he did not give him the individual help he needed nor upon graduation did he get connected to adult services geared towards helping people with mental disabilities.  

Now the “Too Much Coddling” scenario is the exact opposite. This is taking the assumption that the person with the disability is helpless and needs everything done for them. My family also did this as well. In our case, once my brother left high school there was no hiding how far behind his capabilities were compared to others at his age. It was at this time he developed schizophrenia on top of his developmental disability. My family’s denial of the severity of my brother’s disability eventually blew up in all our faces. Then began the phase of “Too Much Coddling”. He was always supervised, he was not asked to help with household chores. We did not give him any opportunities to try to grow or improve. Everything was done for him. This actually led to him losing skills he previously had. In high school he had friends, did laundry, washed dishes and was even able to hold a conversation. All of this was lost by the time he entered his 30’s and we had work on getting this back.   

Overcoming Denial:

In the “Not Enough Help” scenario we need to know two things, who is the person in denial and how severe is the denial. The who can normally be broken down into 2 options: the person with the disability and everyone else. Let’s start with everyone else since it is easier to explain. First question to ask “is this a person that impacts my ability to function in everyday life or I want to keep in my life”. If the answer is no, FUCK THEM! Life is too short to deal with those assholes. Now if they are important to you, it might be time to speak about your disability in depth with them.We have already talked about how to explain your disability in a previous post (Explaining Your Disability) .  If after an honest conversation they are still in denial, try leveraging other people’s authority. Stuff like having a doctor’s note, or having a medical profession or parent speak on your behalf. If after all of that they are still in denial, it might be time to replace them. Seriously, if you have a doctor that is dismissive of your pain or a boss that refuses to acknowledge your limitations because it is inconvenient for the company, switch them out. Find a new doctor and switch jobs. I know it may seem excessive but it is your life and the people in it should not be toxic.  

When the person in denial is the one with the disability, it can be especially tricky. This is especially common with loved one who acquire a disability later on in life as opposed to ones who are born with it. More often than not it is a family member, friend or care giver that notices , something is off before the person developing the disability. Especially in case of mental health it takes a major crisis to occur for them to receive a diagnosis. So how do we remedy the denial before a crisis occurs. As a family member, friend or caregiver you know them best. Start with an honest talk about some of the changes you noticed (more trouble moving around, or they have started talking to themselves, etc). Ask them to go talk to their Doctor about it. Now if they start picking a fight or dragging feet about going, try switching gears. You can try the logical approach. Hey if you go to the doctor and they say you’re good then you have peace of mind, if they find something then you can get that fixed earlier. Either way you win. Another approach is the ask for a favor. Some people think of helping others as being strong and being helped makes them feel weak. Phrasing the doctor visit as them doing you a favor so you can have peace of mind is one way letting them save face. 

Let’s say the person has gotten the diagnosis and is still in denial. They are refusing to go for treatment or are minimizing the effect the disability has on their ability to function with regular life. When it comes to refusing treatment, it is best to try and understand why. For overtly visible items like wheelchairs, braces, canes, etc they may feel embarrassed. Society has made the expectation that people with disabilities are weak and are to be pitied. This frankly is not true. Some of the toughest people I know live with disability. So remind them that they are not their disability. That the disability does not define who they are but it is their actions and personality that do. Another reason a loved one may refuse treatment or medication might be due to side effects. For example many people who suffer from schizophrenia complain that the medication makes their brain feel foggy. Do not dismiss those feelings, try working with them and their doctor to get the right dosage. Try to remind them of what the stakes are for skipping treatment. But most of all show them that you will be there with them during their treatment and they are not alone. It is scary dealing with a disability, however it is less frightening when they don’t go through it alone. 

Dealing with the “Too Much Coddling” approach is almost the exact opposite of the “Not Enough Help”. Instead of helping a loved one through their problems, the family/caregiver is solving the problems for them. The loved one suffering with a disability is not even given a chance to try. I know it can be easier, faster or safer as a caregiver/parent to just solve their problems for them in the short term. However, in the long term you are robbing them of the chance to grow and find a way to get their independence. How do we get to a middle ground? Start with a simplified version of the problem and work on individual steps to solve it. For example we wanted to teach my brother how to cook. Trying to teach him to cook curry dishes at the beginning was a recipe for disaster. Instead we started small. First we tried making a simple salad. First day was learning to clean the produce. Once he had that, we worked on learning to hold a knife and chop vegetables. Then one the final day we got him to do both and bam simple salad. This was the starting block for cooking. Each new skill or dish we taught we, made sure that it lasted 15 min or less. Just remember that when they are learning, they are going to make mistakes. That is part of the process and it is absolutely fine. The goal should not be to get it perfect but to be a little better than yesterday.