The Power in Advocacy

Why it Matters

In our world today we are busy, but if you are struggling with a chronic illness or disease, being busy can be overwhelming. In order to live your best life, you have to create healthy boundaries. These may look different for each person, but they can help create the space in life you need to rest and thrive.

In order to get help from your doctor you need to share your story with them. The checklist you fill out isn’t enough. Let them into your world so that they can treat you in the best way. This means it’s ok to say, I’m not ok. Better or not as bad aren’t good enough. Don’t settle.

Your people need to hear your story as well. They can be a part of your growth, healing, and strength. They may not be in your shoes, but they can have an open heart and be there for you. It is through trust and sharing that we find empathy and understanding. Stick with those who get it and let go when you need to.

How to Advocate for Yourself

I’ve mentioned letting your doctor and the important people in your life in. How do we do that? Educate them patiently about your struggles. Sometimes our illness or disease can be very isolating and even make us feel invisible. It is those invisible diseases or illnesses that can create a strain on a relationship. By sharing your story others can better understand what you go through. They can see into your world.

Steps to Advocate

Explain what your illness or disease is like for you on a daily basis or what time frame matches your story. What goes on that others can’t see? They may not know what they don’t know. However, we can share our experiences to change that and bring them into your journey.

From personal experience I have found this to be critical. With chronic migraine, there are many symptoms you cannot see. Head pain does not mean it’s just a headache. Those words sting. Instead it may include nausea, vomiting, dizziness, blurred vision, as well as, light and sound sensitivity. Migraine can make it hard to think or speak articulately. Even if we know what we want to say or do, the pain and other potential symptoms may prevent that.

Share how you treat or try to manage your illness or disease. What does that include or look like? This can also lead into an essential support system. Let those know how your routine may affect your daily life or even cause you to decline from events you would like to go to. Letting others in will build more understanding and hope.

We also can’t assume people know. One of my best friends and college roommates said to me after many years of friendship, “ I just never really knew all that you went through.” I realized I hadn’t shared enough with her. However, what my migraine road looked like changed drastically over time. I was not always chronic, but when I became chronic it affected every area of my life.

In my migraine journey there have been many seasons. Some were harder than others. Through each of these I had to learn how to manage my health and my life. They weren’t always the answers I wanted, but sometimes what you need has to take priority. I have found that when I listen to my body and make peace with my blessings I am encouraged to appreciate my life. I have been blessed in many ways, even if there are times life has looked different than I planned.

Answer questions honestly when your people are ready to ask. Remember it’s not that bad or better than it used to be isn’t good enough. In that way of thinking, also know it is important for you to give a clear picture when answering questions. This is another opportunity to share your story and bring encouragement into your life.

If people are asking, they want to know and they want to support you. That doesn’t mean you are looking for answers from them or even solutions. You just need them to get it as much as they can.

For me, questions have been a way to keep the conversation going so others can better understand where I am in my journey. Things can change. Some days look better than others, but at all times advocacy has brought me hope and healing.

A Support System Can Be Your Lifeline

Sometimes, advocating for yourself means allowing others to be a part of your voice when needed. Doctor's appointments can be more beneficial with another set of ears or a trusted person in your life to help tell your story. If you aren’t feeling well, it can be harder to explain. If your day finds you in the ER, your person may need to help speak for you. They can also ask questions at appointments or when you are in any place to get treated.

To feel more comfortable with someone being a part of your advocacy, ensure you let them in on how you are doing, what your symptoms are, med allergies and successes or failures. Not your failure, but the meds that may not have worked for you. It may be helpful to have things written down. This can include all of the above.

In my own life, my husband has been a great advocate. When we had discussed questions and I just wasn’t feeling well enough to speak up he helped. I had also tracked my migraine attacks so that they could be a part of my advocacy. Tools like this can also help you advocate for yourself.

There may be times where friendships change or other things change due to your illness or disease. Keep those in your life who truly care and have your best interest at heart. I have been intentional about who I have as my people. That has made a big difference.