One of the most difficult things I have had to learn in the course of dealing with my chronic illness is how to wait. Right from the beginning you are waiting for doctors in waiting rooms, waiting for tests- a whole range of tests from blood work to MRI’s to colonoscopy’s and endoscopy’s and anything else depending on your issue(s). Then, you wait for results which will either prove or disprove your doctor’s theories on what is wrong with you. If the tests are normal or abnormal in a way they were not expecting, this may prompt more testing where the waiting cycle begins anew. This waiting can be days, weeks, months and for many of us, years. This can have profound emotional and mental effects.
Everyone will have a different experience in regards to waiting, but for me what stands out the most is the emotional roller coaster which has lent itself to quite a bit of anxiety. As a person with chronic illness you’re in constant battle with symptoms. Old symptoms that no one has found answers to. New symptoms that are plaguing you each day and making life hell. And the possibility of future symptoms that cause you pain and anxiety and that no one will be able to find an answer to. It’s exhausting going to specialist after specialist, explaining to them what the issues are, what the symptoms are and sometimes getting a different theory for the reasons why you might be experiencing them. These theories are then followed up with zillions of tests, countless office visits and many prescriptions, which can have side effects of their own. It’s incredibly draining and tests the limits of your patience as well as the extent of the reserves of your hope.
There have been many times that I have wanted to give up. Many times, where I have just come undone within the safety of my husband’s arms and told him no more. I don’t want to do this- I don’t want to do doctors or tests or anymore waiting. I’m tired of all these theories and no one being able to figure out exactly what is going on with me. I’m tired of surgery, and waiting to heal, only to be told later on that I need more surgery and that surgery is more complex and dangerous. I’m so very tired of waiting for my body to feel better. I can’t even remember a time now where I wasn’t sick and where I wasn’t going to see doctors and where they weren’t trying to manage something “chronic.” This kind of existence weighs on you mentally. The anxiety builds each day. It’s anxiety about the chronic illness itself, about the future with chronic illness and what that might look like and it’s also anxiety about the present. The anxiety is not only about how you are dealing with your chronic illness, but about how those you love are being affected by your chronic illness. You may not want to think they are being affected, but chances are, they are being affected in some way.
When I began having seizures way back in 2003, I really didn’t think it affected anyone but me and my husband. Little did I know that it was affecting my kids, and most of all my middle child who was so frightened that I was going to have one while she was not around to “save” me, that it was affecting her ability to go to school. Her anxiety, that I thought was school related was actually driven by my seizures. I only found this out recently, and she is now 20 years old. But she was missing so much school at one point that we had received a truancy notice and I had to beg her to go to school. It was a tough time for us, especially because she didn’t let us know that it was because she was worried about me. Kids worry about parents who are struggling with chronic illness, whether they show it or not, in ways that we might not register at the time. Even our family outside of our nuclear family may be affected by our chronic illness, they just may not be able to express it, or be able to come talk to you because it may not be something, they know how to approach you about. You may be the one who needs to start the conversation. Don’t feel like people don’t care or don’t love you enough. You may be surprised at the support you get once you open up about what’s going on in your life.