My family did a great job of seeking out the best doctors and treatment options for my chronic psoriasis. But as I reflect, I think there was a huge element of treatment that they unintentionally missed:
Many times family and friends become so focused on curing the disease that they neglected the emotional aspect of living with a chronic disease.
For those with a chronic illness, the emotional impact can be just as hard to manage as the physical. According to mental health specialists, individuals with a chronic disease have a 24-33 percent risk of depression, while those without have only a 10-20 percent risk. Based upon my experience being an adolescent with an illness, here are questions family members should ask their relative who is managing a chronic disease.
1. How Do You View Yourself?
Since I grew up with a visible disease, I suffered from low self-esteem, shame, fear of what others thought of me. These insecurities grew worse as I entered adulthood. No one, not even the doctors, asked how my disease affected me emotionally, which caused me to suffer alone mentally.
Relatives should have an open dialogue with their loved one on how they feel about themselves. This goes especially for children, who may hide their confidence issues thinking no ones cares, or from feeling ashamed they lack self-esteem. Hiding these issues can increase the risk of depression as they get older. A California study showed that as adults, 43 percent of people would keep their depression symptoms away from the doctor due to fear of additional medicines or information being seen by employers.
2. Are you being bullied?
Although children with a chronic illness are 30 percent more likely to be bullied in school, bullying doesn’t just happen among kids. A CareerBuilder.com survey reported that 1 in 4 people reported being a victim of office bullying. At times bullying can also go unknown. Some may not report they are being bullied because they don’t want to seem weak, or may be afraid of how the bullies will retaliate. At times bullying can also go unknown. Some may not report they are being bullied because they don’t want to seem weak, or may be afraid of how the bullies will retaliate. A study from Yale university showed that victims of bullying are 2-9 times more likely to commit suicide, so staying informed about your loved one’s surroundings and relationships is important.
3. How would you explain your disease?
Being diagnosed with psoriasis as a 7 year old had special challenges. It required me to explain something I really did not know how to properly articulate at that age. When someone would ask what was on my skin I would say psoriasis, but then the next question was “What’s that?” which I couldn’t quite put into words. It came to a point where I started lying about my disease and saying it was eczema because everyone knew what that was and no further explanation was needed. Sit down with your loved one and give them the tools to explain their disease if someone ask. Talk about the myths and stigma of their illness and how to combat those with truths.
4. What’s the hardest part of having your disease?Everyone, from children to adults, copes with disease in different ways. In my experience in dealing with people of all ages with psoriasis, family members follow misconceptions and don’t think to ask their loved one, “how do you feel about your disease?” They may think asking a question like that is trivial for an adult, but it’s not! Asking your loved one how they view themselves will help you get a better sense of where they are emotionally. If they express serious concerns, counseling or a support group may be the next best step.