I did not know I was ill until my first daughter was born. A few days after her birth, my body broke out in a blistering rash. From the soles of my feet to chest, neck and hands, I was covered in hives and blisters. I laid on the couch in our duplex living room – it was 80 degrees in Lancaster County that September, and we had no air conditioning – soaking in sweat and too blistered to move. I struggled to care for my baby and deal with the itching. Desperate to distract myself, I took her for walks every day – not realizing that so much walking postpartum was unwise and unhealthy for a postpartum body.
After eight weeks the blisters abated. I thought it was over. But every time I got my cycle, the symptoms returned.
A little before Adeline turned one a kind doctor took the time to look up my symptoms in a medical reference book. “Did it look like this?” She pointed at a picture of raised, blistering skin.
Pemphigoid Gestationis. Cure: Unknown. Likely to recur every pregnancy, worse each time.
When I was pregnant with Geneva a few years later my symptoms seemed to go into remission. I was so grateful! I had very few flares during the pregnancy. But once again, postpartum saw my skin blistering and burning, spreading to my neck, chest, and forearms instead of my legs and feet. Then it spread to my face. It split the skin around my mouth into open fissures, then dried and flaked off. I couldn’t wear makeup. No lotion – natural or otherwise – could help it or stop it. It got in my eyes and I couldn’t see. A friend watched my children while I lay in bed in the dark.
I found a new doctor. I did elimination diet after elimination diet. Supplement after supplement. We found some help through these things and made some progress, but it was now four years into the journey, and every two weeks I was covered in burning, peeling, scaling skin. Autoimmune Progesterone Dermatitis. I now had not one but TWO possible diseases. I was allergic to my own progesterone, but also reacting to my own estrogen. I was bleeding almost constantly and needed progesterone to stop it. But if I took progesterone my skin reacted immediately.
I often wished I could wear a mask to cover the obvious weeping redness on my face (this was pre-Covid). I was demoralized and depressed by it. My most distinct memory of this season is in our little cottage kitchen, the light yellow walls a cheery contrast to my tears. I curled against the dishwasher, weeping into my knees. Josh came in and slid down the dishwasher beside me, pulling my head to his chest.
“I wish there was something I could do.” He whispered. But there wasn’t. I was chronically ill – and no one could fix it.
Chronic Illness Taught Me Rest
Unlike other chronically ill people I was still able to work, walk, and generally function while in pain. Perhaps that was partially my season; my entire chronically ill experience has been housed within a season of small children and a husband who was working full time (often long hours). I was also building a business and writing books. My illness was like an unwanted companion, someone I learned to live with and work alongside. Though I was able to function, I was not able to function at my normal capacity. The pain kept me from that.
This was the hardest part of chronic illness: the slowing down. My swollen face made it hard to see and therefore, hard to write. My burning arms made it difficult to carry my children so I found other ways to entertain them.
Chronic illness forced me to be content with less. I was forced to learn weakness, to learn dependency (on God, husband, and others) in ways I never would have chosen. I had to accept help, not give it. I had to show up ugly and covered in a rash. I had to learn humility and reject vanity. All the lessons I would not choose were taught through my illness, and the greatest of them was rest.
When I could no longer earn my place in friendship, I had to rest in the love of my friends.
When I could no longer prove myself through more doing, I had to be content in who I was.
When I could no longer come into the world best face forward, I had to accept my broken beauty as good enough.
When I could no longer busy myself with distraction, I had to rest in God’s love and presence.
Rest is not about watching TV or reading a book on the couch. It’s a change of heart. It’s a change of motive. It’s a change in our spirit from striving to contentedness; it’s acceptance, but not apathy.
Chronic illness taught me this.
Are You Glad for Chronic Illness?
Someone asked me last week: “Are you glad you walked through chronic illness?”
I am not glad for the pain. I never wish to go back there. I am not glad for the toll it took on Josh or the tears shed over my inflamed body. I am not glad for the unwarranted suggestions and the averted glances in the grocery store. I am not glad for being asked, “What’s wrong with your face?” in the check-out line and my tears streaming as the cashier watched numbly, unsure what to say.
God understands when we don’t celebrate the ugly parts of chronic illness. Not everything has to be tied up with a bow.
Christ did not demand I find a redemptive quality in every painful moment. It’s possible to regret the experience and still give God praise. It’s possible for redemption to be bittersweet, for memories to sting and fruit yet be borne. We don’t have to like our pain to be grateful for how it shapes us.
So yes – I am glad I walked through it. I am glad because I had Christ. It’s also important to note that God did not give me chronic illness. Illness is a product of a fallen universe, a broken system, the impact of sin on a groaning world. Christ is not a masochist; He is my Messiah. It was His presence in my illness that encouraged, equipped, strengthened and comforted me. I shared in His sufferings as a person living in brokenness and He met me there. He did not cause my pain. He redeemed it.
Chronic illness taught me rest, and for that I am glad. It taught me compassion and patience. I am glad about that too.
Chronic Illness is Never Wasted
My pregnancy with Ivan, my third baby, healed my autoimmune diseases. I am calling myself healed because my symptoms are almost entirely gone. I’m not on my supplements or an elimination diet. I am able to take my much-needed progesterone and I haven’t flared in almost 18 months. That could change – but I’m not focusing on “what ifs”. I’m grateful to be symptom free, and I am grateful for what Christ shaped in me through this journey.
However your chronic illness story shapes you, I pray that you are able to recognize the growth in yourself and celebrate it – little as it may be. I pray you can see the kindness of God in your pain. It was His presence that comforted me at my darkest moment. I pray you can learn, with me, that rest is not just an action but a heart attitude, and illness teaches it well.
I pray you see that God did not cause your illness – He meets you in it.
Your pain will not be wasted, dear one. There is Sabbath here.
“He gives power to the weak, and to those who have no might He increases strength…Those who wait on the LORD shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” (Isaiah 40:29-31)
