Category: autoimmune disease

Invisibly Ill, and being still, a re-visit

~ Kristin ~ 1 Comment
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. 

I am just a human, being, revisit

~ Kristin ~ 1 Comment

This post, written in July 2014 at the beginning of my quest to do less and be more, seems appropriate even in July 2019, at the end of a weekend where I hung out with my granddaughters, simply being.

Many have pointed out the irony of being called ‘human beings’ in a culture that is so focused on ‘doing’. We often find our worth, meaning, and identity through what we do. Strangers, upon meeting, ask one another, “so what do you do?”  The child comes home from school, and the parent asks, “what did you do today?”  The husband says to the wife, “what have you been doing?” It’s fine if what you did was close a million-dollar deal, get an A on a paper, or promote world peace, but not so great if what you did was file for bankruptcy, get in a fight with a friend, or simply change diapers all day. When we form our identity or measure our worth based on what we do, we may end up struggling with perfectionism, workaholism, and, in the absence of peak-performance, depression.

I must admit from the start, that in the world of doing, I have been an over-achiever. I stood at the starting line of adulthood declaring that I was going to win. I was the mom who, while holding a full-time teaching position, trained for and ran a half-marathon, baked cinnamon rolls and tortillas from scratch, clipped coupons, and made all my children’s clothes (just kidding on that last one). You get the point. I have got doing down. To a fault.

I often do when I don’t want to feel, or when I need to be in control, or when I am angry or afraid.  It is my way of avoiding the interior me — the human being.  

So when my health began to shift and I suddenly found myself unable to do all the things I like to do and started to be, it was pretty ugly. I began to be angry, and scared, and depressed, and worried, and sad, and bored. I didn’t like to be with me. I was downright whiny — and this momma has never done whiny!

My strategy to cope with this was, of course, to do something!  While I was struggling to manage all the responsibilities of my full-time-plus position as a teacher and administrator of a high school, I spent evenings and weekends applying for all kinds of jobs where I could do less! After about six months doing that, I got an interview and an offer to do, shockingly, more!  And then,….and then….a solution was provided! I didn’t have to do anything!  My husband was offered a position that relocated us to a new environment and provided me with some time to just be. And here we are.

Being.

A long time ago, a huge group of people was following Jesus around, so he walked up the side of a mountain and started speaking to them. He said, “You are the salt of the earth….you are the light of the world.”  He didn’t say “Be the salt of the earth.” Or, “be the light of the world.”  He said “you are“. The word ‘are’ is the present tense plural form of ‘be’.  We are already the salt of the earth and the light of the world. Our identify is not dependent on what we do. Our identity is firmly planted in Christ. We are His.

I enter this time of rest and be-ing chanting this mantra, “I am His. I am a human, being His.”

I will pray that you find some space to just be today, too.

Epilogue: Five years later, I’m still trying to find the balance between being and doing. I’m discovering in many areas of life that balance is not about choosing one option (i.e. being) over another (i.e. doing) but about finding ways to live in the tension of the existence of both. Our identity is based on who we are in Christ, and He calls us to do — to live our life — out of that truth. We can do great things because of who He has made us to be, which is really not as easy as it sounds, especially in a culture that values accomplishment and status. We can easily forget that the most important is already done; we quickly fall back into patterns of trying to do more to earn position, identity, or status. However, when we realize that our identity is based on who we are in Christ, we can freely do without the added pressure of earning our worth.

As I watched our granddaughters this weekend, I loved them every minute — when they were charming, when they were naughty, when they were sleeping, and when they were showing off. My love for them was not based on what they were doing; I am simply in love with their beings. As they grow, others may not be so kind, but the One who made them — and us — will love them through all the things that they do, while they learn who He has made them to be.

The same is true for you and me.

Be kind and compassionate to one another.”

Ephesians 4:32