Invisibly Ill, and being still, a re-visit

Click above if you’d like to hear my creaky morning voice read this post; otherwise, read on!

On Monday, I wrote about autoimmunity (full post here) and how I function daily in January 2020. Many of you wrote to thank me for sharing my journey. In light of that, I thought it might be useful for this week’s re-visit to be my very first post on autoimmune disease from way back in July 2014 — my second blog post ever. A lot has changed since then — my diagnosis, my symptoms, and my reality. Everyone’s struggle with illness is different, and many of those struggles we cannot see. Many more than I are invisibly ill.

In my first entry on this blog, I mentioned that my doctors had advised me to take some time off to rest. Some of you who know me might be thinking, “Well, shoot, you look fine to me.”  Let’s talk about that for a moment. 

People who have autoimmune diseases have a unique experience: although they may look fine, they are sometimes debilitatingly ill. In addition to feeling horrible, they have the added burden of people questioning the validity of their illness, or worse, accusing them of hypochondria. I have been extremely blessed to have very supportive people in my life, but many do not have this experience. [There are other invisible illnesses. However, since this blog is my experience, I will write about how my disease, psoriatic arthritis, affects me. I am learning that everyone’s experience is unique.]

If you didn’t know me prior to 2012, you might see me on the street and think I am an average middle-aged woman, and in most ways I am. In fact, even if you did know me before 2012, you might not notice that much has changed — I’ve gotten a little older, a little grayer, a little rounder, but overall, I look the same. However, my life has changed dramatically.  

Some things you may notice.  

  • I wear glasses more than not now. When I was 15 I replaced my Coke-bottle bottom glasses with contacts, and I never went back. However, many autoimmune diseases, including mine, come with chronic dry eyes which make contact lens wearing difficult. Additionally, I am on immunosuppressant drugs. These drugs, along with a round of steroids, created a perfect environment for ocular herpes. Ocular herpes can recur, especially in people who wear contacts. So, glasses.  
  • I walk more slowly, and sometimes with an altered gait. I am especially slow when I first stand up. Stairs are a challenge. I used to run 5-6 days a week. In fact, I completed two half-marathons after the age of 40, the second one in under two hours! Chronic pain in my hips and back along with chronic fatigue have halted my running career. I now aim to walk 2-3 miles a day, 4 or more days a week. I can do this if I am careful about the other things that fill my day. 
  • I look wiped out, like I haven’t slept or like I’ve been sick. I am wiped out. My body is constantly fighting inflammation. I sometimes crawl into bed before 6 pm. This can add to my joint pain, but I sometimes physically don’t have the steam to do much more than lie down. 

What you probably won’t notice. 

  • I sometimes can’t remember your name, or the four-digit code for our house alarm that we’ve had for six years, or my social security number that I memorized in high school. Chronic fatigue causes the brain to forget things. 
  • Joints throughout my body — fingers, hands, feet, hips, knees, elbows, shoulders — not only hurt, but also seem to be radiating heat. It feels like I am constantly bathing in IcyHot. 
  • I sometimes just feel like crying — not necessarily from pain, or sadness, or fatigue, but maybe from all of those.  
  • I do have psoriasis, mostly in places you can’t see.  

All of this is exacerbated by stress, weather, environment, and fatigue. Things that help include an altered diet (gluten- and dairy-free, lots of veggies, fruit, nuts, seeds, etc.),  Pilates, walking, medication, supplements, acupuncture, massage, and rest, plenty of rest.

It is 1:45 a.m., technically morning, so I went ahead and read my Bible reading for today. Matthew 8 recounts the stories of Jesus healing a man with leprosy, the Centurion’s servant, and many others. I have thought about this extensively. Jesus healed many. Will he heal me? Should I, like many Christians suggest, pray for that healing and ‘claim it’? The prophet Isaiah says, “Surely he took up our infirmities and bore our diseases.”  

You know, I am not sure I should pray for that. You might think I am crazy. You might look at my bulleted lists above and say, “why wouldn’t you want to be healed of that?”  

Not all illnesses are physical. I am pretty convinced that my emotional/spiritual health is improving as my physical health has become limiting. But wouldn’t Jesus want to restore all of me? He will one day, for sure, but perhaps he is using this illness, in this season, to cause me to be still so that I can know he is God in a way that I haven’t known before. 

Some blessings I have noticed in my illness:

  • I have an amazing husband who has never once doubted my symptoms, even when I have. 
  • I have friends, family, and coworkers who are supportive and who have helped and encouraged me.
  • Slowing down and being still makes me more accessible to the people in my life.  I hear more of what they have to say, even if I do sometimes forget it!
  • I am learning to be more sensitive to the needs of others and not to make assumptions. I was feeling sorry for myself one day at a school function when a parent reached out to me and asked how I was doing. Only after I had whined and complained did she share that she had terminal cancer. I never would have guessed — she was always engaging and positive!

So, for now, I am content, even in this circumstance.  I know that “in all things God works for the good of those who love Him” (Romans 8:28). I do love Him, so I am going to continue to be still. 

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