To the People Who Say 'But You're So Pretty' When I Say I Have Lyme Disease
A lot of people are confused when they see my photos on Facebook. My mom has talked about how she will be talking to someone and they think I am healthy, because I look fine. The truth is that when you are chronically ill, you have to push yourself and do something fun every once in a while. When I go out and do my modeling and acting, it takes every ounce of strength from my body. I get really sick afterwards, but it is worth it, because I get to have one fun day. I get to feel human and worth something. About a month ago I had a photo shoot. Afterwards I was so tired and sore I couldn’t move. My back hurt so much that I couldn’t sleep. But to me, all of the pain is worth it.
The best things you can say to a person with an invisible illness are, “I believe you” or “Tell me about it.” When people say something like this, it makes me feel validated. This is very important for a person with an invisible illness. When people ask about my disease and want to be educated, it makes me feel amazing. It makes me feel like they care about me. If you care about me, I also want you to care about the disease that is effecting my life so much. I think most patients with an invisible illness can relate to having to deal with people not understanding how you can be so sick, yet look so “normal.”
It’s hard to be so sick and look “normal.” People always think you are faking being ill. I am really sensitive, so I can’t take a lot of medications. Some people with Lyme have a port, a PICC line, or other things that signal they are somehow sick. I can’t do any of that, which in some ways is good, because all of those treatments are hard. But it can also be frustrating not having anything that signals I am ill.
I have to use a cane or wheelchair sometimes, because I can’t walk far distances. We have a handicap placard for our car so I don’t have to walk far. I always get confused faces when people see my family get out of our car all walking. I’ve talked to other Lyme patients about being in a wheelchair. I’ve found that a lot of people think that being in a wheelchair is black or white. Either you can’t walk at all, or you can walk perfectly fine. That is not true. Many people in wheelchairs are in them because they can’t walk far distances.
When I go out, it takes me a while to look healthy. I put on regular clothes (not my pajamas), I put on makeup, and do my hair. Now I don’t always do this, but when I want to look healthy I do. When I am going to modeling it usually takes me two hours to get ready. I think that the hardest and most tiring part for me is getting ready. Taking a shower is a lot of work for me. My makeup is to cover up dark circles and dull skin from not sleeping. When I don’t leave my house I am constantly in my pajamas, no makeup, my hair in a bun. I usually don’t take many showers either, because like I said it’s a lot of work. These are some of the things people don’t know.
When I am around people I try to be enthusiastic and happy. No one except my family sees me at my worst. I fake being healthy when I go places because it’s easier. These are some of the struggles I deal with having an invisible illness.
Follow this journey on Kali’s Blog.
The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Hi, my name is Kali! I love reading, watching tv shows, researching things I’m interested in, and cuddling with my therapy cat Naya. My dream is to go to film school and then work as an actress and tv writer. I love storytelling and it’s been a great way for me to distract myself when I’ve been really sick. I love to travel. My favourite city is London. I would love to live there someday. I have been lucky that I’ve been able to travel some despite my health and all I have to do medically. It’s definitely more difficult to travel, but I’ve always had the mindset that I’ll figure it out and I have. I may have to do things others don’t, but that doesn’t stop me from trying to do the things I love. I have been apart of the chronic illness community for many years. I was born three months premature in Vietnam. I was adopted by my parents and have lived in the USA my whole life. I have Ehlers Danlos Syndrome and have multiple comorbidity conditions, such as GI motility disorders, GERD, POTS, inappropriate sinus tachycardia, MCAS, peripheral Neuropathy, neurological issues (seizures, on and off paralysis etc.), chronic fatigue/Epstein Barr, hypoglycaemia, urinary retention etc. I have also had Chronic Lyme and other tick borne illnesses. I started having symptoms as a very young kid. I first just had joint issues and would hurt myself easily. Then when I was in third grade I got bit by a tick and developed other symptoms. That’s when I started getting more sick. I was mostly functional until I was in 9th grade. I started missing a lot of school and had to drop out in 10th. I have been mostly homebound since then (about 7 years). I am in a power wheelchair, hooked up to my TPN or other infusions 24/7, have a gj feeding tube, I use urinary catheters and spend most of my days and nights doing medical treatment, going to appointments, and calling people. I like to raise awareness and connect with others going through similar things. Being chronically ill can be very isolating, but we are not alone. I have learned many things throughout my medical journey and I wouldn’t change any of it. I try to stay positive, optimistic and continue to think about the future and have dreams on all I want to do. I’ve learned life is precious and I try to live without regrets. One of my favourite quotes is, “every day may not be good, but there’s something good in every day.”
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