How To Cope When Your Parent Is Diagnosed With An Autoimmune Disease
I always heard bits and pieces of stories from 1994, the period when my dad was out of work due to a mysterious illness. It never amounted to anything at the time, as far as I knew, so I kind of wrote it off, which was easy since I was never privy to most of the details. It wasn't until 2010, when the symptoms came back, I started connecting some dots.
First, it presented in the form of vision impairment. I'm sure there were additional physical symptoms as well, but as the youngest daughter, I wasn't aware of every piece of the puzzle. Even though I was now an adult, I still wasn't really aware of everything going on.
I knew my dad had a doctor's appointment, but didn't think anything of it. I remember walking through the front door after being out and seeing my parents sitting on the couch. My mom turned around and said something along the lines of, "Well, it's multiple sclerosis," as if I should have been expecting it, maybe because they were?
I didn't even know what multiple sclerosis (MS) was, not really. But hearing my dad had been diagnosed with anything was way too much for me.
I didn't know what would change or how quickly. I was uninformed about MS. All I knew was it was an incurable, invisible and chronically painful autoimmune disease. How does a 20-year-old deal with knowing her dad, one of her best friends, will have this disease for the rest of his life?
The simple answer for me was not to deal with it at all. I went back to college, came home every weekend because I didn't want to miss one second with my dad since I didn't know how much time he had and I pretended nothing was wrong.
Now, more than 10 years later, I'm still not sure if I'm really coping with my dad being diagnosed with MS or if I've just become used to him having it. However, that's not the approach I would recommend. You have to learn how to fully comprehend and deal with a situation like this. Especially children of parents diagnosed with autoimmune diseases deserve answers, explanations, comfort, encouragement, and most importantly, healthy coping mechanisms.
Robert H. Phillips, Ph.D., wrote these helpful coping mechanisms for families dealing with an autoimmune disease diagnosis for the American Autoimmune Related Diseases Association.
Have a family meeting. Phillips suggested, since all family members are affected if someone in the family is ill, it can be helpful for everyone to share feelings even if they're not the ill one. This can also help children, regardless of age, understand the disease at hand and be able to familiarize themselves with what to expect.
"For this technique to work best, all available family members should be included. Give each person a predetermined amount of time to share their feelings, gripe, air grievances, even cry," Phillips wrote.
- Maximize good communication. Phillips recommended achieving effective communication by being cautious and gentle toward any feelings presented, scheduling time for conversations related to the autoimmune disease, allowing appropriate time for these conversations, expressing feelings clearly and objectively and asking clarifying questions so nothing is misunderstood.
Listen carefully. Maybe equally as important as communicating effectively is listening effectively.
"If you don't really hear what others are saying, how can you truly understand what they're feeling?" Phillips wrote. "Some suggestions include not interrupting when people are expressing their feelings or opinions, making eye contact and being sure you're fully aware of what they're saying, and even restating their comment in your own words to show that you understand what they've said."
- Work together to change family responsibilities. As the child in this situation, you may have to step in and pick up some extra chores or do things yourself that your parents had always done for you before the diagnosis. Phillips noted changes in responsibilities can bring about anger or resentment, so working through those changes together with your family can help avoid conflict and navigate the difficulties.
Having a parent diagnosed with an autoimmune disease at any age isn't easy, but it's especially hard when you don't have an understanding of the disease or an outlet to share how you feel. Even if you have to be the one to implement these coping mechanisms in your family, don't hesitate—everyone will benefit from your actions.