5 Steps To Advocate For Yourself Or Another With A Chronic Disease

How do you stick to your convictions even in the face of someone saying you cannot do it, a doctor telling you this is not the right course of treatment or fear telling you, you’re doing it all wrong?

Learning how to advocate for myself and to stick to my convictions has been perhaps the most important lesson I’ve learned in the past few years. But it took some time to get here. My journey has not been an easy one.

Nine years after being diagnosed with Crohn’s disease and following my doctors advice on treatment, I sat in my bedroom in tears from the pain Crohn’s disease so graciously provides, including stomach aches, severe knee and ankle swelling and just overall body aches. In addition, because of all the biologics taken over the years, my immune system had weakened and I developed other debilitating symptoms. I had already failed Remicade, Cimiza, Humira, and Entyvio. Facing surgery as the next option, I decided in that moment that something had to change. I was going to treat my Crohn’s through diet.

My GI was skeptical and still is, but “agreed” to the course of treatment. A year and one month later, I am improving every day and my disease has slowed. Even now, my GI will mention the latest drug, clinical trials, or surgery as options, but I choose to stick with diet.

What To Do When Your Doctor Is Pushing You One Way And Your Intuition Another?

Imagine this scenario: The bathroom in the hospital has been your bed for the past 24 hours. You just spent the last day having uncontrollable diarrhea with some nausea, not able to keep anything down. Finally, you are sitting in the hospital room, able to lay still for a moment’s breath after the staff has managed to get your symptoms under control. Diagnosed with Crohn’s or Ulcerative Colitis a few years ago, you have failed three biological medications. This episode is another severe flare.

The doctor comes in and says, “We are going to start you on another biologic and on a regular diet.” You ask, “Does my diet have anything to do helping to control my illness?” The doctor says, “No,” but your gut says otherwise. You tell the doctor, “I am not going to do another biologic. I’m going look into alternative treatments including diet.” He strongly advises against it, recommends you start the biologic right away. You have a follow up appointment in two weeks. You have two weeks to decide next steps.

What do you do?

You have your answer? Okay, good. Now imagine it was your child in that situation instead of yourself. What do you do? Is your answer still the same?

Your answer should be the same for both scenarios. The right answer is you advocate for yourself or your child or your loved one.

  • Advocacy is defined as: the act of pleading for, supporting, or recommending a particular cause or policy.
  • Self-advocacy is defined as: the action of representing oneself or one’s views or interests.

I am sure we have all found ourselves in a similar situation with our health journey, when the doctor is pushing you to go one way, but your intuition is pushing you to go another. You have hit a crossroad on what to do. The decision to stand up and fight may come easier when you are self-advocating. However, what happens when you are fighting for a child and you have medical professionals threatening to call CPS because you want to go against medical advice and try a more holistic course of treatment. That is a tough predicament for a parent to endure. How do you know when it is time to advocate for you or your child?

When Do You Need To Fight For Yourself?

  • When you feel like your medical team is not addressing your concerns.
  • When you feel strongly about a particular method of treatment and your medical team has not acknowledged the option.
  • When you feel bullied or shamed into a specific course of treatment.

No one knows your body or your child’s body better than you and no one knows your values or limits better than you. Medical professionals are there to offer guidance in helping you heal, but no one course of treatment is right for everyone. At the end of the day, you are the patient and you are in charge of your body, and you/or your child’s treatment.

5 Steps To Advocate For Yourself Or Another With A Chronic Disease

Step #1: Get Knowledge

This is the most important step. You cannot be an effective advocate for yourself or your loved one, if you do not understand the basics of the predicament you find yourself in. Whether diagnosed with Crohn’s or or another chronic disease, you should understand the basics of the illness. After understanding the facts, ensure you are knowledgeable about how it affects you or your child specifically. Crohn’s or UC does not appear the same in everyone. Everyone has different symptoms, so knowing first what the disease is and how it affects you/child is the first step in advocating for yourself.

To help you get started, here are a couple of resources to learn more about Crohn’s and Ulcerative Colitis:

Step #2: Do Your Research

Knowledge is the understanding of the disease, while research is having tangible sources that support your specific position. To be an effective researcher, you will need to know what to research.

  • Are you advocating for a specific diet therapy such as The Specific Carbohydrate Diet?
  • Are you advocating for use of a particular drug such as LDN?
  • Are you advocating for a particular biologic, Remicade over Humira?

Whatever issue you are advocating, you will want tangible facts and research to support your position. If you are strongly pushing to treat with diet, find research studies, scientific articles, books, etc., which prove the benefits of the particular course of treatment you are seeking. If you feel strongly about using one medication over another, research each drug, side effects, etc., compile them and be prepared to discuss with your medical team.

If you have young children, research laws in your state regarding child welfare. Know your rights and what steps to take should a situation arise where a doctor threatens to call CPS. Research lawyers.

Step #3: Take Emotions Out of it

This is probably the biggest hurdle, but a necessary step. We want to protect ourselves and our loved ones. Nevertheless, emotions can get us into trouble. Thinking with a clear head and presenting a strong case is critical. It is ok to be passionate and feel strongly, but it’s important to find a balance between being passionate and being level headed. You have done the work, now let it speak for itself.

Step #4: Listen

Advocating for yourself or your loved one is not about getting your way or nothing at all. On the contrary, it’s about getting your view, concerns and opinions heard, and if required, compromising to propel you forward to your end goal.

Listen to what your doctors are saying, and make sure you understand and ask questions. If you do not agree, you can intelligently say why and why you prefer a different course of treatment.

At every checkup with my GI, I go in prepared with a list of topics to discuss. If I want to try a new approach, I go in with research already in my hand prepared to discuss pros and cons. I listen to his advice and his opinion, then I make the best decision for me. Sometimes, he disagrees with what I choose, and sometimes, we meet in the middle because I recognize he has my best interest in mind. At the end of the day, I have made an informed decision, and he supports it because I am in control and he is there for guidance.

A good example is using prednisone as a treatment method while using diet therapy. It’s not a biologic and it can help in the short term. You and your doctor can meet in the middle, agreeing to take the drug for a short period of time, but make plans to taper off as quickly as possible. Having short and long-term health goals will help you decide where you will compromise and where you won’t.

Step #5: Pray

This step is not for everyone. However, it is worth mentioning for those where it applies. Prayer is the most powerful weapon you can have in your corner for those who believe. Understand that you are not alone and that God is there to guide you through it all. Pray for wisdom, understanding and strength.

Remember advocacy, in it’s sum, is fighting for something you believe in. When it comes to our health or that of our loved ones, it’s important to remember that you are in control. Don’t let anyone bully you into a decision, trust your gut and find a medical team you trust. At the end of the day, you or your loved one will have to live with this disease, so you should have a say in how to manage it. Medical professionals are an important part of the team, but they do not know everything. They are there for guidance. You have the ultimate say.

Named after Cindy Frei’s son Caleb, who has an autoimmune illness (Crohn’s) and is on a restrictive diet, Caleb’s Cooking Company sells healthy fast food (pizzas, chicken nuggets, enchiladas etc.) that is organic, grain and gluten free. Their food has no added sugars and is 100% free of GMO’s or preservatives.

Glenys Coker is a blogger, chef and writer. Her journey to healthy eating and living started in 2007 after being diagnosed with a chronic disease (Crohn’s) at age 18. After years of using modern medicine in the hopes of finding relief, she was faced with the option of surgery as the next and final option. Convinced there was another way, she discovered the Specific Carbohydrate Diet and her life was forever changed.

This article was republished from Caleb’s Cooking Company blog.

See also:
9 Tips To Help Manage Anxiety Over Your Child’s Chronic Disease
What Does The Environment Have To Do With Diseases That Affect The Immune System?