This Is For The Record

I guess if I'm going to dance around it from time to time, and then complain about having to convince someone I need a disability parking tag, I should probably attempt to describe the nature of my chronic illness for those who don't already know. I have been avoiding this post for some time for several reasons. One is that I don't want to seem like a bore. We all know people who tell us all about every minor ailment, medical test, and brush with pain they have ever experienced. I don't want to be that person. Another reason is that the nature of my illness is not all that easy to explain (or at least it doesn't seem easy to me) because I don't quite fit into any one disease category. There is the issue of where to start and end when telling the story of a chronic illness. Then there is the fear of sounding like a complainer. And there's the feeling that I should be able to tell this story in a spellbinding and delightful way, being that I am a writer, when really I feel creatively dead when I start to think about it. But if you will humor me, and keep in mind all my disclaimers and insecurities, I'm going to try to get this out of the way here and now.

I have an autoimmune condition. Autoimmune disease happens when the immune system (which is the system that fights off illness and infection for your body) misfires, and begins to attack healthy tissue. There are all kinds of autoimmune conditions from hyperthyroiditis to diabetes to lupus to rheumatoid arthritis. Autoimmune conditions occur primarily in women (the ratio is 9:1 compared to their incidence in men). Scientists do not know what causes autoimmune conditions to develop, although there does seem to be some genetic influence. Pregnancy, illness, and stress are also considered possible triggers. The likeliest explanation for their onset seems to be a combination of genetic predisposition and other factors. Autoimmune diseases tend to flare (become more active) and then go back to what doctors call "baseline" disease activity, which is different for everyone. While the symptoms of autoimmune disease can be treated with varying levels of effectiveness, there is no cure for any autoimmune condition, although it sometimes does go into remission in some patients.

My experience with autoimmune disease began when I was a child, with joint pain and photosensitivity (sensitivity to the sun). It was pretty well-managed, and I had a long remission until I was in my mid-twenties. The remission was so long that I never really thought of it as a remission, and it didn't occur to me that the "blip" of illness I experienced when I was in 4th grade would ever again be a factor in my life.

I guess I knew it might again become a factor when Husband and I first tried to start a family, and didn't have very good luck (infertility is very common in patients with autoimmune disease). With the help of doctors, we then had amazing and miraculous luck and have our three lovelies to show for it! During my first two pregnancies I always felt wonderful, but after delivery was another story. After each of the boys was born, my joint pain and fatigue returned with a vengeance. There also seemed to be a component that affected my digestive tract, and I lost a lot of weight. After a while, my symptoms were stabilized under the care of a rheumatologist. I also found that I felt much better and was able to gain weight on a gluten-free diet, so I have been gluten-free since 2003. Although I had difficult stretches, with pain and fatigue as my regular companions, I look back to that time now and think I wasn't too bad back then.

It was during my third pregnancy, in 2005, that my disease worsened considerably. Starting about halfway through that pregnancy, I developed severe joint pain, swelling, and stiffness. I remember that it seemed to happen literally overnight: one day I was quite fine, the next day my hands and feet were practically frozen stiff. The fatigue became debilitating, and I struggled to gain weight. The remainder of that pregnancy was difficult, but we (me, Husband, doctors, family, friends) all thought my troubles would be over after I delivered the baby (who ended up being Sister). We were wrong.

I have seen many doctors, including many doctors at the nearby World Famous Medical Clinic (which I will refrain from naming, since I have mostly gripes and laments about my experiences there). I don't have a hard and fast diagnosis beyond what the World Famous Medical Clinic's rheumatology docs say is "severe inflammatory arthritis with a mild lupus suggestion." When my illness comes up in conversation with people I don't know very well, or don't feel like explaining all the gory details to, I say I have rheumatoid arthritis. It covers my basic symptoms, and it is something with which most people have some familiarity. There never has been a clear explanation for my weight loss/digestive tract issues. Over the last several months, we have landed on a medication that seems to work better than others had before. My pain and stiffness (which are primarily in my hands, feet, shoulders and hips) and fatigue are better-managed, and my weight is up. I still experience flares from time to time. I need to know and respect my limits. But I'm glad to be more stable now.

I began the journey of serious illness in a state of bewilderment: a true lack of understanding and wild confusion over what could be happening and why. Then there was some denial: I think, for example, that it took a few years for me to understand that this is not going away, and this is not something I can fight, or overcome with a positive attitude, or treat with herbal supplements. There was an anger phase. I am not completely done with that. There was the mourning phase - the goodbyes I had to say to certain abilities and hobbies and dreams (not to mention a dear little Cape Cod, white with black shutters, in Highland). I am not completely done with that, either. I think now I am mostly on the stretch of the journey called Learning to Live With It. Someday, maybe I will reach the promised land of Acceptance.

I must say how crucial the support and help from my family, and all our wonderful friends and neighbors, has been throughout the years of my illness. Because of them, I know what it feels like to have one's life saved. My life was not snatched from the grips of death in a flash, but has been tended and preserved lovingly, and piece-by-piece, by so many caring people, gestures, words.

There are about a hundred pieces I could write on the challenges of illness, and a hundred more I could write on the gifts of illness. The punch line of each piece would be this: that, despite the difficulties and the pain and the fatigue and the anger and the goodbyes and the limits, I have a really good life. Life can be unpredictable, imperfect, and downright difficult. But every night, when I lay me down to sleep, I am overflowing with gratitude for life's beauty and magnificence.

[Okay - there - I've done it!]


CitricSugar said...

Thank you for your honesty and authenticity. I didn't know to ask about it... But never once did this post seem like you were "whining." Living with chronic illness is a part of your reality. It by no means defines you but it certainly informs who you are. I wonder about your feeling of creative death - does the feeling lead to thinking about your illness or does thinking about your illness cause the feeling? Pain can be an unique lens through which to view the world. While it doesn't have to be your constant focus, it might be worth exploring from time to time without fear of depressing your audience.

Thank you very much for sharing - it could not have been more timely for me.

Molly said...

In response to CitricSugar - I think feeling creatively dead comes from thinking, and thinking too much(!), about it. Maybe I have not lived with it long enough yet to have the perspective I need to feel fluent enough to write about it. And my fear of sounding like a complainer doesn't help. But I like your idea of seeing pain as a lens......... I am going to play around with that in my notebooks. Thanks.

Ms. WK said...

Thanks for sharing, friend. Again, another window into a world I feel so far away from...

Anonymous said...

I know this was hard for you to do. Thank you for letting yourself share our experience with others. I love you, Mom.

shaunms said...

Yes, thank you for sharing. I agree it is hard to find the right place between oversharing and being honest/not hiding.

Also -- I like the look (I would say new, but I don't think it is that new!)

Sarah K said...

Dear Molly -- I'm so glad you decided to do this post! However, I think you should have complained MORE! :-) I know you don't want to sound like a whiner...but, sometimes I think you just have to let people how hard life is with this illness. I feel I only comprehend a tiny bit about about what you experience daily...but I do know that, especially when it was really, really bad you had to deal with some very difficult things. Like Dave getting you dressed every day not being able to stand up long enough to brush your teeth. These things are probably not on the radar of most people. But, we need to hear it, we must hear it, not only so we can understand what's going on with you, but also so we can refocus how we view our own lives and our perception of "a bad day."