I think when you have an invisible chronic illness it is hard for people in general to understand the depths of your disease. I am not loosing my hair and my skin is not discolored (most of the time) but I am very sick. I think it is easy to see a picture of someone and assume because they have some makeup on, their hair is done, and they are smiling that they are doing good. I think that sometimes others with Lyme disease judge by this as well based on comments I have read on Lyme support group boards. Remember everyone’s normal is different and we all need different things to make us feel good and get through the day. There are many days that I force myself to put a little bit of makeup on even if I don’t leave the couch so I don’t feel so blue. I shower everyday because it makes me feel good. The day after I had an 8 level thoracic spine surgery I had my husband shave my legs in the hospital because it made me feel better. What I am trying to say is that everyone has different things that lift them up and keep them away from the darkness of this disease. Being supportive and understanding is the best gift you can give someone who has an invisible illness.
Here is an example of a picture that I posted on Facebook from a recent vacation of a boat trip that we went on. I did have a very fun day on the boat but my illness limited me and presented many challenges.
I tried to snorkel (I am a certified scuba diver but haven’t been diving in several years) but immediately felt overwhelming fatigue once I got into the water and almost didn’t make it the 5 feet back to the boat. Someone had to pull me the last few feet. This was a huge disappointment and crushed me! The captain of the boat and the other boat guests were so supportive and understanding of my disease that helped lift my spirits. The captain convinced me to float a little bit on the life ring so I could experience the ocean that I love so much. If you look at this picture and do not know the back story you would think I am doing good. My plea is to not judge based on outward appearances.
Here is another picture that If you look at you think I am doing good… but you are so wrong. This was a really hard day for me but I was running out of time to get our family Christmas cards done. I asked a friend to come over and take some photos because I couldn’t handle going anywhere. Up until an hour before this picture was taken I was in my PJ’s with no makeup on and my hair was a mess BUT I forced myself to get ready for the pictures so my family could have a normal Christmas card. As soon as the pictures were taken (about 30 minutes) I was back in my PJ’s and collapsed on the couch.
Others have commented that “I am looking good” because I am probably the thinnest I have been in years but please understand that I am thin because I am nauseous much of the time. Also the medication I take makes me feel like I am being poisoned and sometimes food just makes it worse. It is like saying to someone who has lost 30lbs because of cancer that they look great. It’s sad that our standard for looking good is being thin from illness.
I am sharing all this to help those who are not going through this disease understand better that assumptions based on photos are usually inaccurate. Also to remind my fellow Lyme warriors to be supportive and not judgmental. Many people suffering with Lyme disease are great at putting on a fake smile and not really sharing how they are feeling. Let’s face it if we always talked about how shitty we are feeling we wouldn’t have any friends outside of the Lyme community.