Self-Advocacy is….

The dictionary defines self-advocacy as the action of representing oneself or one’s views or interests. Expanding on this what it really means is learning how to speak up for yourself, make your own decisions, knowing your own rights and responsibilities, and how to get the information you need. There are slight variations in the definition depending on where you look but most are pretty close.

Why Is it Important

When your living with a chronic illness or rare disease being your own self-advocate can sometimes be necessary. If you don’t learn to speak up or obtain the information that you need, then it can turn into not getting the care that you need. Especially when you are diagnosed with a disease or illness that is rarer. There tends to be less the medical system can do in these cases, and so you need to be more assertive. I’m speaking purely from my point of view having been diagnosed with a rare disease. However, this speaks for pretty much anyone and should be a basic life skill.

Practicing Self-Advocacy

This can be the difference between getting the answers and care that you need and not. It really is this balancing act when it comes to how you advocate for yourself. If you find you aren’t getting answers then start asking questions and be direct, firm and polite. When something isn’t clear to you ask for clarification. At the same time, you need to be able to listen to and respect other points of view. We are all entitled to a basic level of health care. How we go about getting that level of care is important! Know what you’re talking about or the questions that you are asking. Have a strategy that you put into place in order to get what you want or need. Then, of course, have support through family, friends, and other patients/advocates.

Being Effective

There are a lot of ways that a person can be effective in advocating for themselves. I think one of the most powerful ways though is to believe in yourself. You are worth the effort that it takes to advocate for yourself and to be able to protect your rights. Setting clear goals for yourself will help you in being able to obtain what you want or need. Ultimately it comes down to you! Are you going to let others make decisions for you, or are you going to take control over the decisions that affect your life?

Self-Advocacy is a Lifeline

Whatever you do never give up! There are going to be times where things get hard and you face tough obstacles. Those are the times that you need to remember why you’re advocating for yourself. Keep at it and don’t be afraid to go after the things you want or need. Sometimes it’s going to take dedication, strength, and determination to get yourself the things you need. Not to mention a whole lot of God!

In Conclusion

Through my own personal journey, there have been times where all I’ve wanted to do is give up. The most obvious being the day I received my diagnosis. That day was a dark day! After almost a year and a half journey just to find a diagnosis I was told nothing else could be done. However, this is where being my own best advocate has helped me to obtain a quality of life that I wouldn’t otherwise have with CRPS.

I refused to believe that nothing could be done, and I started to do the research in order to obtain the knowledge I needed. Then with that knowledge, I started asking questions and we came up with a treatment plan. Things might not be perfect by any means because it’s a rare disease with little known about it. I fought for what we can do right now and I’m an active voice in my care and the decisions that we are making. That’s where the understanding on my part has to come in. There’s a limitation to what I can do at this point however and I have to respect those limits.

I leave you with this. When it comes to self-advocacy there are three things to remember and those are to know yourself, know your needs, and how to get those things that you need.

You Have The Power To Create Change!

Its been a rough go lately dealing with extra pain but somehow I manage to keep moving forward! A few weeks ago I traveled down to Huntington Beach to attend the Global Genes Rare Disease Summit. The stress of the travel was hard on my body and although I had to fight a lot of extra pain it was well worth it. There’s a trade off that comes with living a chronic life and I know there are others of you out there that understand what I’m talking about. Its all a part of me moving forward with my life and not allowing your illness to take all control!

I arrived home from the Summit changed but in a really good way. When your sitting beside a person who is one of only five people in the U.S. that has a rare form of cancer things are suddenly put into perspective. There was unique story after unique story each one impacting me in a different way. It was impossible to take away just one thing! If I felt inspired to do something about CRPS before, I left feeling as if I had to do all that much more! When I looked at the work that some people had been doing to raise awareness for their particular illnesses, I had to ask myself what am I really doing? At the end of the weekend we all went back home having gained 500 friends and a wealth of knowledge to take back to our communities.

I really feel I was able to make some strong connections and tap into some resources that will be useful here in my own community and province. Although its hard at the best of times to battle on with chronic illness I believe God gives us an abundance of strength when we need it the most, never giving us more than we can handle. With that being said as I left the conference knowing that I needed to be stronger in my advocacy efforts I came to the conclusion that no matter what I face or take on, God will provide in every way I need Him to along the way. I don’t want to be that person who says “I can’t” just because the path in front of me looks too difficult. I need to remember that God is guiding this walk and that when I’m lacking clarity or vision that I’m to look towards Him.

As I prepare to have the first ever CRPS Awareness day here for the Province of Saskatchewan I can feel my legs begin to tremble just at the thought of having to put this one day event on. Some of the people coming to this event hold important positions within our community and even our province. So sometimes I question my qualifications or I tell myself I’m way out of my league when it comes to taking this on. However nothing could be further from the truth. My qualifications speak for themselves having lived this illness for the past ten years! I need push forward because I have a testimony within my story that might just help one person find the care they need, or cause one Dr. to stop and think about how they diagnose and treat a patient. It might even be that one person from our government who comes to the event and is impacted. Leading them to say that we need to work on policy and legislation. Let me be very clear! All I’m saying is that by standing still I won’t create change!

Fast forward two weeks because this post was suppose to be up already but there’s just been too much going on and not enough time to do everything! CRPS Awareness Day went ahead this week and was a huge success! I’m not going to lie when I say I was a little worried that I wasn’t going to fill seats for my key note speaker but we were at full capacity and I think a few people other than patients walked away better informed of what CRPS is. The next day I was asked to speak at another conference and share my story with a group from within our health district. As much as I was nervous about getting up and doing it I knew I had to because we need to spread the word and make people listen.

Its not about being qualified! Stories bring with them power to change, whether it be my story or your story or someone else’s! It’s only when we move that we make a difference but you have to ask yourself are you willing to do it? Through sharing my story and all that has been thrown at me over the last ten years it is my hope that I will make a difference. All I can do is hope and leave the rest up to God!