Tuesday, May 10, 2011

Finding Out You Have Lyme Disease

                ** This post is dedicated to my new Lyme friend, Melissa **

Desperation, fear, anger, uncertainty, hope, relief--finding out you have chronic Lyme disease will do a number on your emotions. I remember clearly the phone call from my doctor, "Your Lyme test came back positive." That day will forever be etched into my memory. I remember perfectly the relief, the tears, the anguish, THE FEAR!

If I could scoop each one of you up into my arms and hold you tight, I would! I would tell you what I wish someone would have told me about Lyme treatment: It's going to be hard--perhaps the hardest thing you've ever had to do in your life--but you are going to fight with all you've got, and you are going to do it! Believe in yourself and NEVER GIVE UP!

One of the first and most important things you can do (if you don't already) is start loving and respecting your body--it is going to be fighting very, very hard for you. You may feel incredibly angry and disappointed at your body because you are sick and unable to do the things that you want to do. That is normal! But if you can change your focus to what your body is doing for you, instead of what your body can't do, it can make a huge difference in your attitude. Your body is fighting a war for you even though you can't see it. Most of us would never talk to a loved one the way we talk about our own bodies! Be proud of your body!

You have likely figured out that everything about Lyme disease is controversial. Sadly, there are going to be people in your life that don't support your diagnosis. (This very blog was inspired by one of those people!) Though it is very, very hard, the quicker you can distance yourself from the negative people in your life, the easier your recovery will be for you. Surround yourself with people who are kind and compassionate and who will lift you up as you go through treatment. Often times, the negative people are well-meaning family members, and you may have to make some tough decisions. Your health is worth it!

A very helpful thing to do is to find a Lyme disease support group-- whether in your city, online, or both. There are many wonderful blogs out there about Lyme disease. I have linked several on the right to get you started. Again, I caution you to try to avoid surrounding yourself with negative people. Many people with Lyme grow very bitter about being so sick and you yourself may be struggling to keep your head above water. Surrounding yourself with negative people who are battling this difficult disease can make it hard for you to keep up hope. Look for people who inspire you and give you courage! Remember, also, that reaching out to others who are struggling with Lyme can help you, too.

I won't sugar coat it, Lyme disease treatment is hard. But fighting to get your health back is worth it and it is possible. There are going to be a lot of bumps in the road. There will be times when you want to throw in the towel. But it should be said again, NEVER GIVE UP HOPE! The best thing I ever read about having a chronic illness was this, "Never, ever give up: Your breakthrough might be right around the corner!" (I wish I could remember where I read that so I can give credit to the wise person who wrote it!)

Lyme treatment involves a lot of trial and error. There is no one treatment that works for everyone. This can be very discouraging, but with each new medicine that you try, try to remind yourself that it could be the one that brings you back to health. You never know until you try!

The beginning of treatment is hard, because you have to face the fear of the unknown. It's likely to be a long and slow journey, but you have to start somewhere! So I leave you with this quote from Lao Tzu:

“A journey of a thousand miles must begin with a single step.”


  1. This is a great clear picture of what is ahead for treating Lyme while encouraging with never giving up and having hope for recovery. Joyce Meyer said "When you are tempted to give up, your breakthrough is probably just around the corner." Maybe that is where you heard it? Lovely post, Alyson...

  2. Thank you my new friend! I am so exhausted from it all and am still trying to figure out what to do for my kids. It is scary to think in a few months, I won't be able to function as much as I do now (which isn't much when you're exhausted.)I hope so much that my children never have to go through this and that the worst of it for them will be seeing me go through treatment, since my treatment is inevitable. Thank you for your encouraging words! I will be a loyal follower as you are just what you tell me to seek...a positive voice, a supportive person who will give me hope.

  3. Thanks so much for writing this Alyson --not just for Melissa, but for all of us. :)

  4. I have chronic Lyme disease as well. It is awful and at some point most of us pray to die rather than live with the pain. But we have to be here to show the nay-sayers and insurance companies that this is not a disease that can be wished away.