Warning. This is going to be a truthful examination of the affect of serious autoimmune disease on a person’s daily life. Myself actually. I am going to lay bare what its like to have your own body slowing try to kill you. I am also going to examine what its like to be suffering and be in a family that has suffered from what the medical world considers “rare” disorders. Though I will show glimpses of the good in my life and I have lots of things to be thankful for, this isn’t intended to be primarily an uplifting and positive series. It will have those moments, but it is intended to be a raw and visceral representation of what its like to go through this. So be warned, it could be triggering for some.
I also intend this to be a diary as my condition/conditions progresses. I hope if you see this you will share it with other people you know that suffer from either my condition or ones like it. Though this won’t be very cheery to the able bodied, it will be a comfort to those that sometimes find it hard to explain or express how they feel day to day.
Some people will find this overly dramatic. Suicide, really? Lots of people have autoimmune diseases and do just fine, you say. Well there are levels of autoimmune diseases and some respond well to treatment and diet. Others, do not. But the definition of an autoimmune disease is your own body trying to kill itself. So the title, in my opinion is appropriate. I hope you get a chance to read this and it helps you understand what its like for those in your life that may suffer from this silent killer.
I was reading something on Facebook the other day about people with chronic illness. The article was pretty good, but what got me were the comments. It strikes me daily just how clueless people that never had a disease, or those that have had disease but not a chronic one, are.
So I thought I would write an open letter to the able bodied. If you are a chronic illness sufferer, you know who I am talking about. The co-worker that thinks if you just get a good nights sleep, you’ll be right as rain the next day. The family member that says “boy, you are sure sick a lot”. The well-meaning client that tries to get you on the newest diet fad, because, if you just lost some weight….
I suffer from Primary Biliary Cirrhosis. Its an autoimmune liver disease where my own immune system attacks my bile ducts and destroys them. Fun huh? Well, it causes extreme fatigue, digestive difficulties and pain. I was recently diagnosed with Thyroid Cancer as well, which is a nice little twist. So I know about chronic illness.
At the end of this post I found a funny little video that you will probably enjoy.
Dear Able-bodied person:
I am very happy that you have never been affected by a chronic or debilitating illness. I truly am. I wouldn’t wish this life on anyone. But there are a few things you need to understand. When you get up in the morning the day is your oyster. You have a long list of things to do and you have the energy, capacity and brain power to do it. You may tire out a little here and there, but nothing a good stiff cup of coffee won’t fix. When I get up, I have to slowly evaluate what I will be able to accomplish that day. If I go to work, I probably won’t be able to go to the grocery. If I have to stay after work to catch up on some paperwork, I won’t be able to attend drinks with you and the girls. My life is all about choices now. What do I wish to spend my precious energy stores on? I can’t decide at the last minute to run off after work and go shopping. I have to weigh how I feel, how much pain I am in, and how tired I am. I may get lucky and feel fine so we can go shopping for shoes after work, but I won’t know that until about five minutes before.
I’m sorry that you think my Facebook posts are depressing. But unlike your life, which consists of endless barbecues, kids games, road trips and exciting activities, mine consists of work, trying to make enough time for my family, and endless doctors apps, tests and waiting on results. Life has taken on more meaning for me than the next mindless sporting event, shopping trip or vacation. I found out I have an expiration date. Something you have too, but seem to like to try to forget by your endless activities.
Just because I showed up at an event doesn’t mean that I am suddenly “all better”. I have good days and bad days. This is a good day. I decided to use some of my energy on attending this event. I would appreciate you just take it at that and not try to plan my social schedule for the next week. Because I chose to come to this event doesn’t mean that I can now attend so-in-so’s baby shower. (note to readers. I loathe baby showers. Well or sick. So I would probably skip out on that one anyway. But I digress)
Thanks for the suppressed eye roll when I said I was tired the other day. I appreciated your attempt not to be too open with the fact that you think I am making all this up and have no clue how I really feel. (again, the bad person in me wishes just a little disease on you at that moment. Devil on my shoulder and all that).
I also want to thank you for telling me, “but I look so well.” Yeah, it took me an hour and some pretty darn expensive make up and skin care to appear like I just rolled out of bed and showed up to do my job. I know I look pretty good. Thanks for that. I would really like to show you a snapshot of how I feel, not how I look, but that isn’t possible. I still have some self-respect so I do try. I could just give up trying so I would look like I feel. But I don’t need your pity. I need your understanding.
Lastly, I would like to tell you that I really do understand that you probably will never “get it”. Unless you walk down this road, you never will. But a little understanding, a little patience, and a lot less annoyed sighs would make my life so much easier, m’kay?
Signed, Your struggling and chronically ill friend.
Now I know that was a little pointed, but its where many of us are. I really have more to my life than doctors apps and work, but at this point in my life, its not too far from the truth. However, I am still able to work, still able to keep after my house, help out my aging father and aunt and work on this blog. I hope I can continue to do all those things, and without the eye roll.
video shared via youtube and created by Rest Ministries Illness support.