Do Unto Others...

Writing about my journey with chronic illness isn't easy and I agonize over what I am to say with every entry. Perhaps I overthink things. But I want what I have written here to matter...to help...perhaps to touch a heart. Since I transferred my blog to this site, it has become more public, which is a good thing. After all, I have chosen to commit myself to openness, honesty, transparency and vulnerability. And what good is all of that if my story never reaches anyone? So here I am, knowing in my heart that I am supposed to publish an entry today, yet not quite knowing what direction in which to go. So I guess I'll just dive in and start typing...

Cruising brings joy to my days and gives me
"something special" to look forward to.

Since the muscle weakness of Myasthenia Gravis that hits me out of nowhere when I least expect it has rendered me unable to drive, I am home bound most of the time. I admit it, I spend a good deal of time on Facebook. I know it gets its share of criticism, but to me, there is a lot of positive to be said about Facebook...it is my connection to the outside world, it provides a way to stay in touch with family and friends, and affords me the opportunity to have a ministry of sorts in some online support groups made up of people like me who are chronically ill. In fact, I have made some solid friendships with a few special people whom I have never even met...bonded together through the commonalities of suffering, encouragement and support.

I've noticed on Facebook recently that there has been an increase in the number of cries for validation and acknowledgement, a surge in efforts to educate and promote awareness, and pleas for people to stop judging others who have invisible disabilities. Videos and memes abound, yet I still feel as if our voices remain unheard. People are still being criticized (sometimes shouted at) for parking in handicapped spots (even though their disabled placards are clearly in view), while others continue to hear biting comments such as "if you would get up and do more, you would feel better" (untrue), or "at least it isn't fatal" (also not true), and my favorites, "but you are looking so good, you can't possibly be sick" and "how wonderful that you have planned something to look forward to...I guess you are well now!". It is not a surprise to me that I see many in my groups that battle frustration, isolation, and depression on top of the pain, weakness and suffering they are already experiencing. The fact remains, the conditions my online support group family and I have are NOT curable! This is a lifetime sentence, if you will, and while I know it is wearisome for our family and friends to watch us struggle, it is even more so for us because we WANT to be better, to do more, to live life...and we fail more often than not. So here are five...no, six...things I think anyone with a chronic illness wants others to know. If you have a friend or family member with a chronic illness, please consider each of these requests with them in mind:

1. Please, please...stay in touch. I. love. people. I am a people person, and thrive on relationships with my family and friends. So it gets lonely when I go day after day with no contact with anyone. A quick call, a card or note, a short visit (yes, even a surprise "drop in" can light up my day...as long as you don't mind if I'm still in my pajamas!), anything to let me know that you care enough to take a moment to reach out. I have a dear friend who lives 300 miles away that sends me inspiring messages several times a week. I know that I can count on her because she is PRESENT, if not in body, in heart and spirit.
2. Don't judge my situation and dismiss the severity of my conditions based on how I look or how I feel on any given day. My illnesses do their damage on the inside and I can assure you, I am thankful I don't look as badly as I feel! Besides...it's kind of like the weather in Texas...wait around 5 minutes and everything is likely to change! The conditions I have are unpredictable and can go from barely tolerable to completely debilitating...even life-threatening...without warning.
3. Sometimes I need help, but I am not comfortable asking for it. Please feel free to offer to come over and vacuum or dust. More than likely, I will say "Yes!" because it has been far too long since I felt like doing it. A simple meal (something that can go in the freezer and be reheated when needed) can be a huge blessing, especially on infusion days. IVIG treatments, which I get every two weeks, are very difficult and I am completely wiped out afterward. I know I am not alone on this, so if you know someone that is getting treatments for their chronic illness, helping out in this way is much appreciated.
4. Understand when I have to say, "No". I love being with my family and friends, but I can't always be at functions, even though it is my heart's desire. And because I have a primary immune deficiency in addition to all my autoimmune diseases, it is dangerous for me to be around anyone who is ill. So please let me know ahead of time if anyone in your household has a cold or other illness. Sniffles for you can turn into a deadly bout of pneumonia for me if I were to catch your simple cold.
5. Stress is very detrimental to the healing process, so I try to avoid it, if at all possible. Keeping stress and drama to a minimum is really better for all of us, don't you think?
6. When I am in my wheelchair, please be respectful of my situation and address me directly when speaking to me. I may not be able to walk, but I can hear and I can speak. I find it disrespectful and insulting for someone to speak above me or around me to my husband, other family member or friend as if I am not there. I have been amazed at the number of times this has happened to me...in restaurants, stores, even on vacation. And having to fight for a place in an elevator while able-bodied people clamor on with no regard for the disabled is a whole story within itself, best left for another day. Suffice to say that kindness and preference of others goes a long way to making this world a better place in which to be.

"Do not let kindness and truth leave you; bind them around your neck, write them on the tablet of your heart" ~Proverbs 3:3~