Everyone needs someone who supports and accepts you for you. Family members, friends, colleagues, therapists can all be considered part of your support system. But do you sometimes feel that those you expect and assume should support you cause more frustration and are barriers to your road to a purpose in life?
It can be especially difficult to live joyfully if disabled people lack support from family or friends. Feelings of denial, anger, and frustration by friends or family are understandable if they lack knowledge of your disability. They can’t feel your pain or experience your limitations. They may do things in hopes of protecting you that you don’t appreciate which increases your frustration. So how do you change attitudes and rebuild your support system?
Here are a few suggestions:
- Have the most important people in your life go with you to the doctor and hear about your medical situation;
- Communicate, communicate, communicate: Talk to each other about needs and desires regularly;
- Explain why there are things you can no longer do but consider other ways you can spend quality time together;
- Consider who you need to build a relationship with and use appropriate language accordingly. For example, a 9-year-old child does not need to hear scary details but may need reassurance that you are not contagious;
- Give brochures, definitions, and even helpful websites about your illness in hopes that they may learn more about your disability. This can be especially helpful if your disability is not visible such as heart disease, fibromyalgia, cfs or even if you are in the early stages of a progressive disease like Parkinson’s or MS.