It’s a hard topic to write about–too few details and the writer seems vague and stoic, too many and the writer seems self-consumed and whiny. I pray I’m able to write my story and encourage others without being either.
This is a tough topic because in light of so much death and tragedy in the world, it feels wrong to even speak of something non-terminal. I, thankfully, have not experienced a terminal illness or sudden death of an immediate family member. The all-consuming pain and grief of such a loss is something I can’t relate to, and would never try. I have, however, come to understand the frustration and exhaustion of a chronic illness and would like to open the hearts of others to what it means to no longer be “normal.”
So this is my story–how I went from a carefree, active mom to a woman forced to choose activities according to the day’s energy and pain level. Enduring a chronic illness has changed my life and personal perception of others who suffer. I no longer see them as people filled with excuses, rather they are filled with a desire to be “normal” while living in an abnormal body. I’ve come to understand it’s not pity they want, but understanding. I’ve joined their ranks and in doing so have been properly humbled. But it is in this humility and weakness that God’s power is made perfect. And I’m learning to be OK with that.
The Lord said, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.
2 Corinthians 12: 7-10
Two years ago I woke to feed a crying 4 month old, and felt severe pain in my hips and left heel. Plantar fasciitis and sciatica are common conditions during and after pregnancy, so I just chalked it to being postpartum. The next morning, I began a familiar self-treatment routine– ice, Advil, lots of stretching, and a super-sexy night splint for my foot. In the past these efforts were effective, but after eight weeks without relief it was clear I was going to have to see a doctor. Dang it.
At the time I had a short list of doctors I saw regularly–an OB, a dentist, and an optometrist. That’s it. And honestly I only ever saw them when it was absolutely necessary, like when “1-800 contacts” would reject my expired prescription or I needed a qualified person to deliver a baby. I just didn’t frequent doctors’ offices–who has time for that?
I started with a podiatrist, and after 3 months of tests, he basically diagnosed me ‘a hard nut to crack.’ Actually he diagnosed me with bone marrow edema and said, “Wow, I’m so sorry we couldn’t help you. Bone marrow edema is really painful.” Thank you, Dr. Obvious.
I was simultaneously seeing a chiropractor for my hip pain, but his treatments were also coming up short. I remember at the height of the hip pain telling my husband I didn’t think I could manage the stairs at our church and we came up with a drop-off plan that included no stairs for me. We are talking severe hip pain. Limping.
When it was obvious to me that something more was going on, I began researching medical literature on my own. Being a nurse, I became my own case study, mapped a detailed history of my health, and examined each red-flag along the way. I read about any condition that fit my profile, desperate to find out what was wrong. I would joke with my husband saying, “If this wasn’t me having to experience it, this medical research would actually be interesting.”
My research findings, along with my chiropractor’s urging, led me to a GI doctor to rule out inflammatory bowel disease, which has been linked to joint pain. There I was lucky enough to experience firsthand what I’d been sending patients off to experience for years. (PS, fellow nurses, that gallon of lemon salt water does not taste better over ice, and I repent for every time I told a patient it did.) My GI visit was uneventful and nothing showed up abnormal. Half a year had passed, and I was getting quite anxious to find some answers! Instead, back to the drawing board.
I continued with chiropractic treatment, and he ordered more tests for unlikely but possible culprits for such severe hip pain, like osteoporosis or avascular necrosis (dying bone.) It was when several small joints in my fingers began throbbing he decided it was time for me to see a rheumatologist. A rheumatologist? That’s a specialist for people with real diseases, and I was skeptical, because I was perfectly healthy–except I’d now been experiencing unexplained pain for about 8 months.
The rheumatologist was all business. She tapped on her laptop as I recalled my full medical history for her, then ordered a gamut of blood tests which included Lyme Disease (common to this area), Lupus and Rheumatoid Arthritis. When everything came back normal I was relieved, but also frustrated–I needed an answer. She prescribed an oral anti-inflammatory commonly used for arthritis (Mobic), which I initially protested taking. With her gentle poker face and beautiful Indian accent she said, “Let’s just see what it does for you, okay?”
I returned for my follow-up a month later a new woman. “WOW! I feel so much better! I can’t believe that arthritis medication worked!” That’s when she broke it to me, “I believe you have Psoriatic Arthritis, that is why it worked. Your history supports this diagnosis, and we need to start you on something to prevent joint deterioration as soon as possible.” (Did I mention she has a killer poker face?) My thoughts went something like, “WHOAH, lady. I do not have a disease. I’ll take your little medicine, but I DO NOT have a disease.”
I went home and read everything I could about Psoriatic Arthritis. Still in denial, I made an appointment with a dermatologist so together we could prove the Rheumatologist was crazy–this was really my plan. Contrarily, he confirmed that I did indeed have very mild psoriasis and the joint pain I’d been having was indeed Psoriatic Arthritis. He recommended I go along with the treatment. I went home and cried. Not because I was wrong. Because I had a disease.
Psoriatic Arthritis (PsA) is an auto-immune arthritis usually found in patients who have psoriasis, a skin rash. A similar auto-immune arthritis more people have heard of is Rhuematoid Arthritis (RA.) In simplest terms, an auto-immune disorder is when your body’s immune system attacks itself causing inflammation and destruction to the body. Auto-immune diseases are more common in women, particularly those of child-bearing age. In the case of PsA, joints and tendons are attacked, and without intervention, devastating joint deterioration can occur over time. Lucky for me, my rheumatologist was not-so-crazy after all, caught this early, and prescribed medications to slow the progress of the disease. The moderate pain still lingers, however, and it’s this daily reminder of my disease that has power to steal my hope.
This journey has been one of the most challenging experiences of my life. Trying to juggle my family and manage this has brought me to my knees at times. As I said, I’d never compare it to more harsh disease treatments and outcomes, but the reality is my life has changed and I–along with those around me–are having to adjust. I’ve enjoyed a life of physical agility and strength as long as I can remember. This condition has taken away some of my independence; I now have limitations where once I had few. Now, people I love are affected, because quite frankly there are times I don’t have the physical strength or emotional energy to “deal” because the pain is so intense.
But even with all that, this new way of life has afforded me something I don’t think I’d have otherwise–a richer realization of my utter reliance on God. Unfortunately, when things are going good, we humans tend to put our hope in those things. We say our ultimate hope is in God, we even believe ourselves. But when you get down to the nitty-gritty, our hope is in our independent ability to control our destiny. When the Lord allows an affliction in your life, you realize just how little control you ever really had.
Enduring this has been a lesson in hope. Hope is much more powerful than I ever realized. With every attempt at healing, I gained and lost hope that the “normal” me will ever return. For months I thought I’d wake up one morning and be able to say, “Well that sure was awful, glad it’s over.” Hope for healing comes and goes. But I have never lost an ounce of hope that my God hasn’t left me or removed His hand from me just because I’m enduring hardship. I’ve cried to Him, questioned Him and flat-out begged him to take this away. He hasn’t taken it away, but no less potent is the HOPE I have that this pain is only momentary, but His love for me is eternal. I can rest knowing His love for me is the greatest need of my soul, and that I have that and nothing can take it away–this is my Hope.
I pray that in some way this post blesses you. I’ll end with this wonderful quote from C.S. Lewis. For the someone in your life who suffers–physically or mentally–I pray you’ll find grace to show them sympathy and understanding. And I pray they’ll reach for and cling to the love of God, the most potent healer of all.
“when pain is to be born, a little courage helps more than much knowledge,
a little human sympathy more than much courage,