Dear friends and family,
I know it may be difficult for you to see what I’m going through, whether it’s through my personal posts or updates when I’m not doing well.
I understand if you feel overwhelmed and intimidated at times. You may have never known someone as medically complex as me before. Maybe you’re not sure what to say, or fear you’d potentially say something wrong. You might feel helpless, wishing you could do more.
As you may know, my health can change on a daily basis without any sort of warning. I have some level of pain every day and sometimes experience flare-ups for an extended period of time. These flare-ups signify my disease progressing and often limit my physical abilities even more.
My body is constantly changing; you may be gradually noticing some of these types of changes in me. I’m not able to regularly participate in many of the same activities and outings I used to do with you. I don’t have as much energy, stamina, or physical mobility as I did just five years ago. This is a very difficult realization to come to terms with.
I don’t expect you to always know what to say or do. If I’m sharing something with you, that means I feel comfortable being vulnerable with you. If I don’t open up to you or if I’m vague, then that usually just means I’m not quite ready to explain what’s going on. Chronic pain, flare-ups, and disease progression are all very personal experiences for me and can be difficult to put into words.
I tend to isolate myself from others when things get especially difficult. During these times I may seem distracted, withdrawn, or more tired than usual. I’m unable to process much of anything when my mind is so focused on what my disease is doing to my body. Depending on what’s happening in my life, it may take me a while to get back to feeling like myself.
If you’re one of the people who have remained close to me even though I seemed distant or was out of touch, I honestly don’t have enough words to express how much you mean to me. Thank you for not giving up on our friendship even when I haven’t been able to be the same type of friend back to you. I value you more than you know.
One of the phrases I hear most often is, “I wish there was something I could do.” I know you mean well when you say this, and I do appreciate that you’re concerned about me. I also understand that you simply want to be there for me in a larger capacity. However, trust me when I say that you’ve already been helping just by showing you care.
I’m encouraged by your virtual support, inspired by your thoughtfulness and generosity, and comforted by your words of encouragement and heartfelt prayers. You have given me so much strength and courage to get through each day. Much, much more than you could even imagine. Thank you.