One day I was extremely frustrated with everything going on inside of me and my inability to explain it to those I love. I had the idea that if I was able to create an easily understandable list, maybe then we would both be able to reach each other when needed. It has helped my family and friends understand how chronic illness and chronic Lyme disease affect every aspect of my life. I hope this will also help someone else like myself – that they may use it as a tool to help those around them understand what is happening in their bodies and minds.
1. It doesn’t matter how often I tell myself, or my family and friends tell and show me that this is not true, but there is always a part of me that feels like a burden.
2. That’s why it’s actually a lot harder than you realize for me to ask for help or even comfort. So offering to do something specific or even just performing a small act of kindness really goes a long way.
3. If I’m distant or disconnected please know it’s not you and it’s really not me. It’s the disease. I’m still here and I still love and care for you just as much.
4. I get overwhelmed with everything going on inside my body and sometimes have to unplug. Other days I may just not feel up to talking. Please don’t take this personally; again, this is the disease and not me.
5. If I’m short-tempered, anxious or even rude at times please just remember I’m constantly under attack from every direction. This can cause my emotions to run rampant. And most of the treatments I go through will only exacerbate my symptoms before I ever seen any improvement. That usually means every symptom physically, mentally and emotionally goes into hyperdrive. Trust me, I know it’s hard on those around me… it’s equally hard on me. I often feel like I am losing my mind completely.
6. Don’t forget about me. When you go through life with chronic disease and have the blessing like I did of some time in remission, those connections mean a lot. Even if it is a Snap or a text, just a simple gesture of love can help a lot, when you feel like you’ve been forgotten.
7. Educate yourself on what it’s like to live with chronic Lyme so you can better understand what someone you love is going through and can even help raise awareness.
8. Saying things like “You don’t look sick” may sound like a compliment to you, but to someone like me it feels like you are questioning my illness and I feel the need to defend myself.
9. If you say you’re going to do something for or with someone who is sick like me… then do it! There isn’t a lot that I can look forward to right now – no dating, going out or much of anything really outside of doctor appointments. So when a promise or plan is made to brighten up the day of someone who is sick… stick to it. It’s often the ray of hope we have been clinging to for days or weeks.
10. Lastly, but really the most important part too. Please keep sharing, commenting, praying and giving as you can. This is neither an easy nor cheap journey. And I need all the support I can get.