Tip Talk Thursdays: Advocating for Yourself Medically

Having a chronic or invisible illness is already frustrating in itself, but having to navigate the health care system and properly advocate for yourself can be even more exhausting. You are already in a state of being unwell, so it doesn’t really seem fair that we have to care for ourselves and push people to take us seriously when we barely have the energy or the mental stamina to get through the day. But the problem is, if we don’t do it no one else will and this is how we fall through the cracks.

So what can we do?

There are lots of articles out there that discuss how to be better at advocating for yourself and as someone who has had to do this herself, these were the points that I felt were of most value to share in no particular order.

1. Believe in yourself: You are going to face so many people who will doubt you, question you, and make you feel you may be wrong as well. But don’t fall into this trap. You are a unique and valuable person and you are worth the effort it takes to advocate for you and protecting your rights. You are the one who wakes up day in and day out living through the pain and suffering. So believe in this and remember why you are fighting for yourself so you can learn to become your own best advocate

2. Know your rights: What are your rights? Physical or mental illnesses all have rights in practice. Don’t feel comfortable with a medical professional? Get a second opinion or if serious, look into what it looks like to make a complaint. What medical documents do you have access to see? Can you view your results? Someone with a mental health challenge may feel they do not have the same rights as others, but this is not entirely true. You still have rights and when you are in a place where you cannot make decisions on your own, prearrange to have someone you have chosen to help make these choices for you, rather than having someone appointed to make these decisions.

3. Document: document anything you can prior to your appointment including

• Symptoms
• Recent life changes
• Stress levels
• Sleep levels
• Pain levels
• Current medications (list name of medication, dose you take, and when you started taking them)

4. Ask questions: do not be afraid to ask questions! This was my biggest fault. I got so caught up in the medical terminology that I lost sight of what was really happening to me. Not to mention, a doctor’s tone or non-verbal cues may seem relaxed or nonchalant, which may make us believe that it isn’t something that is a big deal. Best way to make sure that you understand what your doctor is saying? Repeat back what they told you. Simply stating “So from my understanding you are saying….” And they can confirm whether or not you are correct. Some questions you may want to ask:

• What is my next steps? Is it lab work, tracking anything, booking a follow up appointment?
• What should I work on before my next visit?
• Why am I taking this medication? Do you understand why you have to take it? What are the guidelines to taking it? What should you be looking for as side effects? Will it interact with any of the medications you are already taking? This is when having your list will come in handy
• What is the test for? Often times we just get paperwork for lab tests without really knowing what it is for. Asking this simple question can give us better insight about our condition and what to look for.
• Are there any alternatives? What are you available options so you can thoroughly research them
• What else could this be? Helps physicians avoid the most common error which is fixing on one diagnosis and failing to take into account other alternatives.
• How long will it take to get my results? Usually doctors can only ball park it, but it gives you an idea of when an appropriate time may be to follow up if you haven’t heard anything.
• Is there anything you can do in addition on your own to help your condition? Sometimes there are lifestyle changes doctors can suggest to help but often times doctors won’t suggest this unless asked.

5. Gather support: it is a really frustrating time in your life and there are many times where you will just want to throw in the towel or just start to feel like it's not that big of a problem because you have already started to adjust your lifestyle according to your current condition! Having support means having people to remind us that what we are experiencing isn’t normal and that we deserve to get to the bottom of it and get back to a better and healthier pace.

6. Be firm and persistent: Don’t give up. It may take talking to 4 or 5 doctors before you finally are heard, but you will get there. Keep after what you want and follow through on what you say.

7. Bring someone: not only does having an extra set of ears help us make sure we got all the information down, but having another person in the room sometimes can be a deterrent for doctors to not speak over or dismiss a patient and it can be validating for a doctor to see someone else vouching for your symptoms.

8. Make a list of your concerns: sometimes are appointments are not enough time to get through all of our concerns and sometimes what might not be a concern for us, is a red flag for our doctors. Best way to navigate this? Have a list of these concerns jotted down and then hand this list to your doctor to briefly review. This ensures that the most critical aspects of your health are addressed and you don’t forget anything.

9. Be assertive: this is vital in how our symptoms are heard. Assertiveness lets healthcare professionals know we need answers because this is important to US. Assertiveness is a skill that is not natural and has to be learnt. There are tons of worksheets available around assertiveness and creating boundaries. Need a short term solution? Prepare for your appointment with everything you need written down and be prepared to ask questions. Bringing a person again is also a great idea.

• Therapy Aid Worksheets
• Psychology Tools Worksheets

On our social media accounts we asked you guys what you wish you had known before you got diagnosed and this was what you all came up with along with others from other blogs:

·         “I could live a “normal” life but it takes different steps to get there and I’ll probably be exhausted”

·         “I wish I knew how much care and rest the body needs, sick or not”

·         “The mental part is just as hard as the physical parts”

·         “It’s hard and you don’t have to pretend to make others feel better. You’re sick and it’s okay”

·         “Stop holding yourself to the same expectations you held yourself at before you were sick. Your body is telling you it is nor okay, it’s your mind pretending like it’s all okay”

·         “Stop making yourself feel guilty for resting. You’re not useless, lazy, or boring. You are sick”

·         “Even though you may have the same illness as someone, doesn’t mean you share the same symptoms. Everyone’s experiences are unique”

·         “Just because one person overcame their hardship and came out on the other side stronger, doesn’t mean someone else will. That same experience could break them. Call for more empathy in understanding our own strength and making sure we don’t hold the same expectations for others”

·         “I wish I knew how important schedules would be in my life now that I have a chronic illness and understanding that sometimes this means ruling out socializing"

With these in mind and lots of other strategies available online, here's to hoping you are one step closer to getting what you need from your next doctor's appointment. Remember doctors are human and are prone to making mistakes just like anyone else, so it's important that you seek the information you need and never be afraid to get other opinions!

Happy Thursday!

YWC

Sources:

https://mentalhealthrecovery.com/info-center/ten-steps-to-being-an-effective-self-advocate/

https://themighty.com/2018/05/tips-advocating-for-yourself-at-doctors-office/

https://www.togetherpatientadvocates.com/blog/nine-ways-to-advocate-for-yourself-at-the-doctors-office

https://themighty.com/2018/05/what-i-wish-i-knew-chronic-illness/

https://www.psychologytoday.com/us/blog/turning-straw-gold/201701/the-9-most-frustrating-things-about-being-chronically-ill