There are so many things I do not know how to express or explain to the people who love me. The next five bullet points are some of the most important to me.
1. I never wanted to become sick.
I pray every day that God will see fit to heal me. At this point in my illness I do not even fully understand what is going on in my body most days. I just made a list of symptoms to show my doctor which was about 20 bullet points. I am hoping they will connect them to form a more solid diagnosis. I am hoping they have answers, that there is something to be found that is fixable. I have rheumatoid arthritis and have ignored it for many years. Not facing it has only made my symptoms worse. It can take six months sometimes for my body to recover from a flare, surgery, injury or infection.
2. Please be considerate and know I am trying my best.
I am actively involved in a couple different ministries and charities and I love the opportunity to serve. However, if I am there, know it is taking all my energy to get by. Please do not judge me for not being extra social or participating in every event. Please do not exclude me from group activities. I tend to leave as soon as the event is over and I sometimes get left out of group pictures and after event lunches or activities. It can be a painful reminder that I am disappearing from the lives of my friends.
3. There are weeks when I do not leave the house for days.
Texting and social media are very much a lifeline for me right now. Getting up and out of the house is taking an increasing amount of energy. So, I connect with friends via my phone. Sometimes I just need to text and share that I am having a bad day. Even if I do not receive a response, just being able to share it lightens the burden. The friends I do have in my life are very important to me. So, if one of them needs me, even if I cannot make it out, I am always available by phone or text.
4. I have a “knee-jerk” reaction to apologize.
I am always saying I am sorry. I apologize for apologizing too much. I have been trying to shift my behavior to saying thank you instead. Thank you for understanding, thank you for your help, thank you for including me and so on and so forth. Apologizing for my illness only makes me a victim to it, versus having gratitude for what I can do.
5. I do not want to hear how high your pain tolerance is.
That is a phrase I really do not like to hear. It is dismissive, ignorant and comes with an air of superiority. People with chronic pain probably have a high pain tolerance but the pain never goes away! It would wear down the toughest of the tough if there was no end in sight. I am really glad that your pain tolerance is high; that is a good thing. It is just very insensitive to say that to someone who has shared their struggle in chronic pain with you.
Please do not ever take your health for granted because we rarely get warning when things go bad. Becoming chronically ill can go from bad to worse very quickly. If you love someone with a chronic illness, tell them you appreciate the things they can do. Listen to them cry and resist the need to “fix” them. The more you try to fix them, the more broken they feel.