An important part of living successfully with a chronic condition is learning to advocate for your needs. Some people are more comfortable doing this than others. You should feel free to ask a friend or family member to work with you as you learn to become your own self-advocate.

Help is not a dirty four-letter word, yet for so many of us, we’re uncomfortable asking for it.  As a person living with scleroderma, you will find asking for help is key to managing your symptoms and to living a full life.  

Understanding Self-Advocacy

The ability to successfully advocate for your needs and rights is known as self-advocacy. Self-advocacy for people with chronic conditions entails being aware of your needs and priorities, being able to articulate them clearly, and gaining the self-assurance to speak out for yourself. Lack of knowledge or information, a fear of being rejected or confronted, and a sense of being overburdened or helpless are a few common obstacles to self-advocacy.

Building Your Self-Advocacy Skills

Building your self-advocacy skills is essential if you want to become your own best advocate. This includes identifying your priorities and requirements, improving your communication abilities, gaining self-assurance and assertiveness, and learning how to solve problems. For instance, in order to receive the services you require, you may need to learn how to navigate the healthcare system or how to properly explain your needs to your healthcare practitioner.

Some tips to become your own advocate

  • Asking for help is a healthy way of accepting your diagnosis and moving toward the management of it.
  • Figure out what your needs are and what you need help with.
  • Create a list if needed.    
  • Determine who in your life you trust and value as someone who can assist you with these tasks.    
  • Provide this person or persons with specific requests so they can fulfill them for you.  Give them meaningful tasks, with clear and concise timeframes.  People want to feel needed and if you have real authentic needs, others will be more than happy to help you.  Example, “I am finding it more difficult to do my grocery shopping since it causes more discomfort to my hands.  Is this something you could assist me with every other Thursday from 1:00-2:00 p.m.?”  This is a very definable request.    
  • Do not allow guilt to cloud your request. Often people with scleroderma will not ask others for help because they feel because they do not “look” sick, someone might perceive they are just being lazy or looking for an easy way out. Look for these opportunities as a way to educate co-workers, family and friends about the many mysteries of scleroderma. Many people with scleroderma have no visible symptoms of the condition, yet they experience a variety of other internal symptoms that are painful and debilitating. By asking for help, you are sharing facts about scleroderma and creating awareness.   
  • Accept the help graciously and without fear. 
  • Do not allow your self-esteem to be lowered because you are having someone help you. Instead feel the love that they feel, by being able to do something for you, and find the positives involved.
  • Thank the person who is doing the task remembering appreciation can be found in small gestures that do not have a monetary value. A simple “thank you so much”, “I appreciate you”, and a hug, can go a long way to making someone feel valued and appreciated. 

People want to help, but they need to be guided as to how they can best help you. Don’t assume that they know what you need … they don’t! Ask, and give people the opportunity to do something to support you.

The Benefits of Self-Advocacy and Asking for Help

Becoming your own advocate and learning to ask for help can have numerous benefits, including improved health outcomes, increased quality of life, and strengthened relationships. By taking steps to become your own advocate, you can take control of your health and improve your overall well-being.