A few years ago I took up cycling, which I love. On one of my morning rides down the Provo trail, I found myself riding next to a cyclist who pedaled with his hands instead of his feet. As we pedaled, conversations were created, and when I felt a little more comfortable, I asked this individual, “So why do you pedal with your hands instead of your feet?” Now I am sure most individuals would have known the answer and would have never asked the question I asked that morning. Me, I was a little slow. Politely the man replied, “Because I am paralyzed from the waist down.” Luckily, my next words were so much better than my question as I complimented him for his cycling ability and determination.
That day this paralyzed cyclist taught me a valuable lesson. Because that morning I could not visibly see his disability, I jumped to the assumption he was making the choice to use his hands instead of his feet, when in reality he could not use his feet. So often individuals who suffer with either mental health concerns or chronic medical conditions that are not readily visible to the naked eye are judged by others—for actions such as making the choice not to use their feet when in reality, they can’t. If I had met this cyclist in his wheelchair I would not have asked, “So why are you in that chair;” I would have had a fairly good idea. Because I did not meet him seated in his wheel chair with his disability visibly present, I jumped to a conclusion which, lucky for me that day, did not bring about shame or harm but deeper understanding. I was not so lucky with a college roommate.
My roommate, who I will call Julie, had a full ride scholarship and was a very active student who always attended classes. Then one day she just stayed in bed. I thought to myself, “Well, maybe she just needs a day off. Odd for her, but okay.” Then one day of staying in bed turned into two and then three, which started to frustrate me. Each morning I would ask, “Hey Julie, are you going to class?” and would get the response, “I can’t,” to which my mind said, “What do you mean you can’t? There is nothing wrong with you. Just pull yourself up by the bootstraps and go to class! You do not want to lose your scholarship.” Sadly, instead of being supportive of my roommate, I became confused, somewhat judgmental, and frustrated that she would make such a poor choice not to attend class. I did not understand that Julie was not making a choice at that time. Her ability to choose was being taken away by her soon to be diagnosed disability.
After about two weeks of this, I came home after class to find Julie no longer in her bed. This worried me, until one of my other roommates noted Julie went to see the doctor. I later learned that Julie was diagnosed with major depressive disorder, which literally made it so she could not get out of bed and attend class. I felt so bad. All of my cheering and saying, “You got this, come on you can do this, and what in the world are you thinking” had not helped; it only made Julie feel worse. Julie wanted to get up and go to class. She cared about her grades, but her brain just wouldn’t engage. Julie wanted the bootstraps I was so fond of talking about, but her bootstraps needed medication to work. Once Julie was on medication, things were better. She returned to class and graduated with honors. I apologized for my actions, which were quick to judge and slow understand.
With the experience of my biking buddy, my roommate, and hundreds of clients to draw from, I have learned the following about those who deal with the less visible issues of chronic illness and mental health: First and foremost, individuals who struggle with chronic pain or mental health problems want to be loved and accepted for who they are as a whole person, not just because of the difficulties they face. They want individuals to take time to understand what they are dealing with without trying to fix them, judge them, or feel sorry for them. They want to be understood so that their actions or lack of actions make sense. They want open communication which allows for the expression of feelings, exceptions, concerns, frustration, and love. They desire for others to understand that sometimes they can do things and sometimes they can’t, and such a process makes them very tired, frustrated and hurt.
Individuals who have the burden of mental health issues or chronic pain live for the good days, which in some cases can be few and far between. They know that it is hard for those who do not deal with what they are facing to understand, and so often they feel sad that their issues affect the lives of others. At moments they wonder if it is worth it and may even have to learn to accept that life is not going to get any better. Finally, they desire to be of help to their families and wards in any way they can. They desire to be lifted and long to also help lift others.
For the ones who help care for individuals with mental health issues or chronic pain there are feelings of sadness with a desire to fix what is wrong. There are feelings of frustration when nothing seems to help. There are questions like, “Is this my fault, could I do more, and did I do something to make this happen?” Often caregivers feel totally lost and just want to run away. Although they are not the ones directly experiencing the pain and suffering, they also find their lives impacted and can find themselves dealing with anxiety, depression, or both.
Caregivers can feel like the difficulties created by their loved one’s issues will never end. They can feel like they no longer have a life outside of the illness. At times, caregivers express that they do not understand the illness and wonder how much is real and how much is not. For caregivers who see what appears to be a normal person standing there, it can be so hard to remember that for now hands are used to pedal and not feet, because the feet no longer work. They also feel very overwhelmed and just need to share their feelings with a trusted individual who can empathize with the complexities of mental health and chronic illness without judgement.
Both individuals who deal with the mental health and chronic pain and those who love them just want to be understood, loved, supported, and reassured that they are not alone. Over and over again in the scriptures and through the voice of prophets we have been reassured that Heavenly Father hears our prayers, and it is through other people’s actions we often find answers. Those who deal with a constant medical condition need to know not just once they are loved and supported, but reassurance needs to come on a daily basis. This may be hard to do at times but lifesaving. Critical to helping lift the burdens of those who suffer is to take away the silence of that suffering through a warm embrace, a listening ear, a walk around the block, and the gift of time.