Communicating with your Health Care Provider
I’ll preface this with I am a parent of two children 18 and 20 with severe permanent disabilities. I’ve navigated the health care system 21 specialties across 6 major hospitals and tons of surgeries with them for a long time (10 years) and in life and death struggles. I’ve navigated it for myself from blast damage that took part of my hearing and half my leg. Car crashes, three remote plane crashes and a burn to everything above my belt line have happened. I’ve buried a lover and my daughter. I’m fighting for my life right now because of an assault in September. It is not a pissing match by the way. It is my lens, and it is about me telling you the truth about me. From that lens, I offer you a reflection.
There is a lot of talk about experiences with doctors and care team past and present. Some have left care because of a difference in opinion. I worry about anyone that is doing this because I don’t want to see you alone and without care. I know it is hard. I know some of you have your brain telling you to run but fight it. If the doubt about what you are hearing from a professional is there, perhaps it is an area where you really need care. You really need to be heard and respected.
For professionals, they are not ignorant. There is a lot of schooling and experience behind them that you may or may not be aware of. They want the best for you. Let’s try that one again. They want the best for you. One more time – they want the best for you. I know it doesn’t feel like it sometimes. I get that but no medical professional wants to see you harmed. They are using that expertise to help you and , as you know, not everything is going to work on try number one. There is no doubt that some of the professionals can be problematic or are not the right ones to see (education, experience, attitude). But don’t leave yourself without care because of it.
So you’re in treatment. You have a big responsibility ahead of you.
This might include:
- When did I start the treatment? Are there things I am supposed to do to get ready for the treatment?
- What are the side effects? (read your documentation)
- What would be the signs something is working?
- What would be the signs that it is not working?
- When do I need to return to my doctor or care professional?
- What advice did they give me? (write it down)
Let’s talk about families. I’ve hinted to you that it is ok to walk away from unsupportive family. Distinguish this from family that means well for you but you don’t like what you hear. Some family members can’t handle the stress of seeing their relative suffer and they crumble. Others try to show love but are shutdown. I said before that sometimes family takes on a different meaning. Sometimes your group is your family and that is ok. Through those supports, you are not alone.
I wonder how many of you had your families teach you about how to navigate the medical system. How many of you learned who to get access to, when, why and how? There was no manual for that when I left for university. I so wish there was. It would have saved me grief.
Tools to help you along the way:
- Wherever you are, keep something on your wall that says that you are loved. In the darkest time it may be what gets you through.
- Make a list of all mental health resources where you are, their numbers and hours of operation. Post that on your fridge. You might have to use crisis line counseling when the wait for a counselor is too long.
- Keep a binder of your medical history that you can access on the fly. Include any medications where they had an adverse reaction for you.
- Know your medications and their side effects and keep a list of these in your wallet (in care you land in emergency)
- Restrict the urge to run away from your care provider when you hear something that makes you uncomfortable or that hurts. It is going to be so hard but I know you can do it.
- Take a friend with you to your appointment or to the hospital. You’re not alone. If you need support, ask for a social worker or equivalent to help you.
For your appointment, try to have a paper list of:
- What are you there for?
- What are you hoping for?
- What are you fearful of?
If you can’t say those words, hand over the list and let them read it. I’ll share one of mine with you. What am I there for? Skin grafting of my chest. What am I hoping for? Less pain and better mobility. What am I fearful of? Dying on the operating table. I just handed over the paper.
You go in to see your care professional and you disagree with the treatment plan. What do you do? How do you cope with a stressful situation?
- What is the nature of the disagreement? Have I documented my experience enough to include that in my visit with the doctor?
- What is my body telling me in the moment? Have I told my care professional about that?
- What are my options? If I can’t resolve the disagreement, would a different second opinion be warranted from another care professional?
There are some fundamental things to remember here.
- A care professional-patient relationship is based on trust and mutual respect. Being rude or insulting violates that relationship and leads to your care professional dropping you from care.
- It is up to you to accurately convey what is going on in your body, mind and spirit around treatment. It is hard to be so vulnerable around this.
- Do not leave yourself without care. This is so important. Do not leave yourself without care you feel you need.
- It is up to you to find and retain the care professionals you need. If you can’t do this, find friends and family that you can call on to help you. Thank them for helping you.
- You are not trained in everything. You are not necessarily right even though you might think you are. Be open to care professionals.
- Fight the urge to bolt from care. I know it is hard but you can do this.
- Finding care professionals is very hard right now. When you find one, learn how to communicate with them effectively.
- Some doctors see a different patient every 10-15 minutes. This is high pressure. Document as much stuff ahead of time as you can and bring it with you.
Every care professional wants the best for you. That means they are trying to show you love and compassion. It might not seem like it, but they are. Do not leave yourself without care at any point. You need this love and compassion.
Let’s return to my lens. I want to see each and every one of you succeed in your lives. I know you can do it. Your disability is not an excuse for life. Your disability has given you resilience that is so powerful for you to have.
My love and compassion to you,