When we are faced with a limiting health issue where performing "simple" everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This can happen with any health condition or injury, but is especially prevalent with a chronic health issue. It is always there to remind us that we have to work a lot harder to perform tasks that were once so easy. This can get downright exhausting and overwhelming to the point where we might feel much less of a person than we once were.
In my case, I live with a painful neurological disorder called dystonia. I have had it for over 15 years and it has altered the course of my life in many ways. Given the nature of this disorder where the main symptoms are involuntary body movements and chronic pain, it can feel like an outside force is controlling my body. This is very unsettling, which can lead to a sense of helplessness and a decreased feeling of competence. Those of us living with dystonia (and any other chronic condition) have to work very hard to combat these problems on a daily basis. Below are some ideas to help you feel more empowered.
Remember that you are the only one with unique knowledge about your condition and how it affects your life. You are the one who can and should make the major decisions about your life. Only you know how you feel at any given time, what you are capable of, and what your limitations are. Don’t allow feelings of guilt push you into doing something you know your body will pay for, either during or afterwards.
Be careful to not compare yourself to others. No one is better than you. We are all unique and everyone has lived a very different life. We cannot completely duplicate the success of another person because we all take different paths to get where we are. Concentrate on strengthening your own skills and abilities. Be proud of your accomplishments and acknowledge how well you are doing in the face of great challenges.
Prioritize. On your best days you may find you can do more things with relative ease. Other days, a single task might wipe you out for the rest of the day or even several days thereafter. Plan ahead so you can prepare yourself prior to an activity and rest time afterwards if necessary.
Be careful about being a people pleaser. It often means jeopardizing your health for the sake of others, an attribute that may have and may continue to contribute to your symptoms. Do what you can and know your limitations. Others can adapt to you.
Be sure to find doctors you can trust. This is often a difficult task. Dystonia and other conditions are often misunderstood, making it hard to find the right doctor who understands your specific needs, so it might take some shopping around. To assist in this process, educate yourself as much as possible about your condition so you are able to screen your health care team. I wasn’t educated nearly enough in the beginning and I paid the price because some of the doctors I saw didn't know what they were doing and made me worse.
Don’t forget that your doctor works for you. Don’t let their busy schedule force you out of the office before you feel he or she has met all your needs. Your doctor is there to serve you; not the other way around. Together, you and your doctor can map out the best plan for your care.
Take responsibility for your thoughts, feelings, and choices. We are responsible for how we feel about everything that goes on in our lives; not other people.
Advocate for yourself and for others. Learn as much as you can about your health condition so you can make the best choices for your personal well being. Share with others what you learn to help them make smart choices. It is also important to be educated so we understand and are comfortable with the different treatments our doctors propose. Advocate by talking to people about your health condition to raise awareness. Reach out and lend a helping hand to someone who is struggling, write a blog, articles for various online magazines, get involved with organizations and support groups, and get active on social media. Raising general awareness about your health conditon and directly helping others is a big part of personal healing and self-empowerment.
Take personal time for yourself, whether to relax or have fun. Don’t forget how important it is to let go and enjoy life. It is far healthier to focus on all you can do versus all the things you can’t do or choose not to do. Dwelling on problems can make you forget how to have fun. There is joy all around you and there are ways to let go of fear and anxiety, and other problems associated with any health condition.
If you are well enough, take a walk in the park, go to a movie, concert, play, or sporting event. Treat yourself to a massage or other way of pampering yourself. Remove toxic people from your life. Do whatever you can to create peace in your life. You deserve it!
Learn how to ask for help without guilt. We all need help. Let someone else take care of cleaning the house or shopping. Let friends or family members take care of your kids every now and then so you can get some rest. When you feel well enough, pay the favor forward.
Dystonia and most other chronic conditions are survivable. You can still have a quality life regardless of your symptoms. Do whatever it takes to make it work. You can get through the hard times and come out on top. Just keep in mind what’s really important in your life and then go for the fullest life possible. It’s yours to live, one day at a time.