To the Person Who Thought Life With Chronic Illness Must Be 'Boring'
My heart is racing. I was trying to close my eyes and sleep for a while since I’m not doing well at all today, but I had this random thought, and now I can’t get it to leave me. It is really odd the way things come back to you at the weirdest times. I had completely forgotten about it, and then bam! out of nowhere it came. When I was first becoming really sick and eventually left my job, I was explaining to someone how I spent my days inside, how the pain and the fatigue had caused this new lifestyle of mine. I received a response that hurt me and lacked sympathy. Instead of saying it must be difficult to deal with that, the words spoken to me were, “I’d be so bored if I were you.”
Let me tell you that if there is one thing chronic illness is, it isn’t boring. For me personally, I’d have to say the first words that come to mind when I think about the life of people with chronic illness are stressful, inconsistent, trying, challenging, taxing, tough, aggravating… shall I go on? Yes, I barely go to the store anymore. Most days I don’t even step outside. However, the obstacles that come with sickness and disease, both mental and physical, bring anything but a lifestyle of dullness. All day you are occupied with dealing with your pain and treating your pain. On top of remembering to take your pills at the designated times, you often find yourself researching for hours about the side effects you are experiencing from them or looking up alternative ways to help yourself cope with your illness. You try to find a sense of hope that things will get better and will do anything and try anything once to see if it might help you.
I spend a lot of time making appointments, keeping in touch with doctors via their online health portals, and also notifying my lawyer who is helping me with my disability case. I often fill out paperwork for my doctors, too. In between that, there are my multiple bath sessions for the day, and there are the days I spend some time doing my online grocery shopping and possibly ordering some gifts in lieu of going to the actual store. I spent over two weeks alone calling doctor’s offices to try to make appointments when I was trying to find a behavioral health center as my specialist wanted me to. There was the month where my medications caused stomach issues, and I was trying to figure out a plan for myself on how to get better along with my doctors.
No, having autoimmune issues, fibromyalgia and depression is not boring. It’s more than stressful and each day brings on a whole new sense of worry and issues. To most outsiders of the chronic illness world, it seems like we are lazy and lay around all day. This may come as a shock to you, but I can tell you that I don’t turn on the television once until about 8 p.m.
It is comments like these that are hurtful and really do an injustice to our community. I’m sure your opinions of us would change if you just spent a few hours with us. We are a lot stronger than people give us credit for. In short, our lives are not boring because we are too busy trying to advocate for ourselves in so many ways, getting the help we so badly need.