You spend most of your life active and healthy, but then one day, out of nowhere, you receive a diagnosis of a devastating, debilitating, or chronic disease and find out your life is about to change. Primarily affecting women, there are over 80 autoimmune diseases alone that take away the “normal” life you are accustomed to. One day you may be healthy and fine, the next you may find your arms don’t work or you have been hit with severe fatigue. It is a lot to take in and, for many, takes a long time to accept and adjust to. Through personal experience, I have learned that one of the best tools to help you get through the changes on an emotional level is to write a journal or blog.
Keep a diary of your personal thoughts. Remember when you were a young teenage girl and you had one of those little diaries with the cute little locks. You would write and share all your secrets with your best friend; your diary. Even though you may now be an adult with a daughter who has her own secret diary, it is still a good time for you to find your inner little girl and dig out that friend you told all your thoughts to. A diary will give you a chance to vent, to write your frustrations, and to see how you are making changes and learning to deal with your disease. As days go by, going back and reading previous journal entries will show you just how you are adjusting to the new changes in your life.
Keep a journal to track your medical symptoms and current medications. While somewhat like your diary, this journal is a bit different. Your diary is for you to keep to yourself and vent your frustrations. A symptoms and medication journal is something that works as a great tool to show your medical team and help with your treatment. Tracking things like new symptoms or days when symptoms worsen allow your doctor to see what medications might be working and what isn’t. If you also track things on a regular basis, you can start to see if there is any correlation between different things like food, weather, or other outside factors.
This journal is also a great place to track and keep a current record of your medications. With many of the chronic conditions that affect women, the medication list can become very long and trying to keep track of these becomes difficult. Years ago, when they thought I had rheumatoid arthritis, I was taking over thirty pills a day, as well as a shot of methotrexate once a week. These medications would be changed or altered on a regular basis, so keeping up became difficult. Whenever I had a medical emergency and ended up in the Emergency Room, it was always so much easier when I could pull out my journal to provide a list of current medications to the attending doctor.
Use an online journal or blog to keep friends and family updated on your current conditions. As someone with a chronic condition, you will find family and friends constantly calling and wanting to know how you are doing. While this is wonderful and shows just how much your family cares for you, there are days when answering the phone and talking to one person after the other requires more energy than you have. This is where having a blog or online journal becomes a handy tool. Depending on how you are feeling, you can update it when things are good and it will be there for friends and family to turn to and see how you are doing.
A good place, designed especially for keeping friends and family informed, is a site called CaringBridge. CaringBridge created a platform where anyone can create an online medical journal with the purpose of keeping family and friends informed. This site is free for anyone to use, and the ease in setting up a page allows for anyone to be able to do it. It enables you to give your voice to what is going on with your health battles and also works as a great release of thoughts and energy as you fight your battle.
Most of us look for communication and understanding in every aspect of our lives, but when it comes to dealing with the changes a chronic condition can bring, many women are left feeling very alone. Using blogs or journals to share your story with others and to vent your feelings becomes a wonderful tool in your journey to acceptance and understanding of your new condition and new body. It is a daily battle, but one that can be assisted with the power of the written word.