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6 Things to Understand When Coping With Chronic Lyme Disease

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Lyme disease is a tick-borne illness, common especially in the midwest and northeastern U.S. but found everywhere, that usually is treated with a round of antibiotics. When diagnosed, co-infections are often not tested for, and this can be dangerous. For some people, Lyme disease can be eradicated by the routine medication, but for many it does not do the trick. You may still test positive, have symptoms, or even just keep getting sick. This is called post-treatment Lyme disease syndrome (PTLDS) or chronic Lyme disease.

Just because it doesn’t show up in blood tests does not mean that it is not real. Chronic Lyme disease is a serious illness, but it only sometimes shows up in blood tests. These patients are experiencing extremely real pain and telling them they aren’t can be detrimental to their mental state.

1. Mental and physical health go hand-in-hand.

Being sick for a long time can cause anxiety to present itself even if it hasn’t before. Many worry if people find them rude because they cannot hang out all the time, or maybe if because they miss school/work too much they will not be successful. If someone in your life is experiencing this life change, therapy may be something to consider, and especially if the blood work does not show much dynamic change, therapy can help assure the patient that he or she is not alone. Support groups also meet in many cities.

2. There is a difference between Lyme disease and chronic Lyme disease.

Lyme disease goes away in a short period, but chronic Lyme disease may never go away. Creating this differentiation helps patients to realize that they are still sick and they do now have another illness that is affecting them. Medicine regimes may need to change time to time and explaining it this way helps patients in the long run.

3. Some people in your life will not understand and that is OK.

Chronic illnesses can be very hard to comprehend, especially if you someone you love is sick. Many family members have trouble accepting that you may be sick forever and they can not do anything. A chronic illness where nothing “appears” to be physically wrong is commonly referred to as an invisible illness. Invisible illnesses can be extremely hard for healthy people to grasp. You look healthy. Heck, you look just like them! But, you are sick. You can’t do what they do with the ease that they do it. You can do it but it takes more effort.

4. Some medicines work differently for different people.

The side effects of a medicine for you may be different from other people’s. Every case is different and not all strands respond to medication the same way. For example, I was on antibiotics for two full years. I was on six different one-month rounds of Doxycycline other than the initial dose. The Doxycycline did not work for me as well as it had worked for others.

5. It is OK, in fact it is good to speak your mind with doctors.

Doctors can be extremely scary to talk to because they have had eons of medical training that you haven’t (heck, I’m in high school). But, only you know how your body feels, and sometimes doctors forget things that you remember. Not everything is easy to figure out. Not everything is black and white, especially with chronic illnesses. It takes a village to overcome this kind of obstacle.

6. It is OK to be sick!

Sometimes you just need a day of rest. Heck — God even took a day of rest on the seventh day. Sometimes you just need to say that you don’t feel well and today is your day to rest. If you are planning to do a lot make sure to plan sick days. Being sick requires a lot of work and a lot to think about that others don’t have to do. But, in the long run you will be better and stronger for it.

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Lead photo by Thinkstock Images

Originally published: January 12, 2017
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