Tuesday, January 12, 2016

Ten Tips to Be Your Own Lyme Advocate

When I was so sick in the beginning of my Lyme disease journey all I wanted was for someone to hand me a magic pill so I could get back to my life. It took me two years to understand that I had to be an active participant in my own healing and once I had that epiphany, my healing really accelerated. Here are TEN TIPS to help you ADVOCATE for yourself. This is specifically about Lyme disease but could apply to any illness. 

1. EDUCATE yourself about the illness you are fighting. You can't fight an enemy you don't know.

2. ACCEPT you are sick and don't waste energy fighting the reality of your illness (accepting you're sick doesn't mean you are giving up!) There is no shame in accepting the truth of your current situation and it takes energy to resist your reality. Put all of that energy into healing.

3. WALK AWAY from any doctor who invalidates what you are feeling. Again, this is an energy waster. Trust your intuition and what your body is telling you. Find a doctor who will help you get better.

4. REACH OUT for support to support groups on-line, in your community, to friends and family. Let others decide if they can help...you won't know if you don't ask! Some people may disappoint you, but others will support you.

5. At DOCTOR'S APPOINTMENTS ask for copies of everything (it's your health information!), take a picture to your doctor of when you were healthy and ask that it be put in your file, take someone with you to the doctor (they help the doctor see you as a whole person and can be helpful in reminding you of what was said in the appointment), and take a recorder if the doctor allows it so you can listen back to any important instructions afterwards. Some doctors will allow this, some won't.

6. Know what's in the MEDICINES and SUPPLEMENTS you are taking; something could be making you feel "unwell" and we attribute that to a herx. However, for example, if you are allergic to soy and that is in the medicine or supplement you are taking you could be having an allergic reaction. READ ALL LABELS AND ASK QUESTIONS.

7. FINANCES - Look into patient assistance programs for anything you are taking at www.rxassist.org. Or you can do a search of the name of the medicine you take, the manufacturer (this is usually right on the bottle or the papers you get with the prescription) and "coupons" or "patient assistance programs" and you will see a list of the different coupons and discounts available for that medicine.

8. REST ON YOUR BEST DAY. Another support group leader suggested this to me, Eric Huck of the Harrisburg Area Lyme Disease Support Group. It is counter intuitive because when we feel well we want to catch up on life and do everything we couldn't do on our sick days. But if you rest on your best day, you will have that much more energy in the days after.

9.  DEPRESSION, ANXIETY, SUICIDAL THOUGHTS, FRUSTRATION, LYME RAGE - Know when to seek help. Even the most motivated patient needs a professional outside of the family or friend circle to speak with about these very difficult aspects of Lyme and Tick-borne diseases. There is no shame in knowing you need help and asking for it before it's too late.

10. YOUR LIFE - It's your time, your money and your LIFE so don't waste it doubting yourself. Get the answers you need when at the doctor, encourage family and friends to read up on the illness you're dealing with so they understand your journey (if they don't, accept it and move on), and practice giving yourself unconditional love. You are battling a difficult illness...don't make it harder by being abusive to yourself. Take care of yourself and have patience in the healing process.


  1. Thank you, Amy! This is all such good advice. You did a great job at saying it all in a short and sweet form!