Five Honest Truths About Invisible Illness

Lupus. Fibromyalgia. Inflammatory bowel disease. Rheumatoid arthritis. Chronic fatigue syndrome. Myositis. Lyme disease. Depression.  Bipolar disorder. Post-traumatic stress disorder. HIV.  Pulmonary fibrosis. Chronic obstructive pulmonary disease. Congestive heart failure.  Chronic pain.

What do these have in common?  They can all be invisible illnesses.  This is not a complete list – or even a list of the most common.  But all of these invisible illnesses share these five honest truths:

You can’t always “see” the illness: there may be no visible indications of a chronic condition (wheelchairs, supplemental oxygen or other assistive devices), although some conditions at certain points may require these.

Many of these invisible illnesses can be managed through lifestyle change and medication, but they are long term, often progressive conditions and cannot be cured.

People who suffer from invisible illnesses are in pain – physically and/or emotionally.

These illnesses impact people very differently.

Invisible illnesses are a disability in their own right.

But the honest truths about invisible illness don’t stop there.

Because if we’re being honest with ourselves, we care what other people think. 

Way too much. 

We don’t want to be seen as weak and we don’t want to accept that we may have to abandon our existing “normal” in order to find a “new normal” (damn, do I hate those words). 

I’ll be honest – when I hear the phrase “new normal” I translate it to mean something like “settling for less for the rest of my life”.  Sorry if that sounds like a glass-half-empty point of view.

For the first six months or so after my myositis diagnosis, I had a lot of downtime. 

Physically, getting dressed was a pretty big accomplishment.  And taking a shower?  Bravo!  Except that it commanded all of the energy I had and I couldn’t do anything else for the rest of the day. 

So I did a lot of thinking. A lot of worrying.  A crap ton of catastrophizing. 

And then I started doing some get-down-to-business soul searching. It’s human, I think, to try to find meaning – and what better time for an existential emergency than when you’re really sick and you don’t know how much better you’ll get?

Five more honest “truths” about invisible illness.

I thought a lot about what happens to us when we take those five honest truths about invisible illness and mix in a big heaping dollop of that staple pantry ingredient “what-other-people-think-really-matters”.

I’ll tell you what happens. 

We lie to ourselves.

We make assumptions about what others will think. We place expectations on ourselves that may not be realistic.

The five honest truths below are true only in that we choose to believe them.

1. We assume that people won’t believe we have an illness if they can’t see it.

We’ve probably all witnessed a seemingly healthy person pull into a handicap parking space.  HOW DARE THEY?! They even have the tag hanging from the rear view mirror.  They get out of the car and they look perfectly fine.

I’ll fess up.  I’ve seen this. More than once. And unless someone appeared (according to my own personal definition) to be ill or disabled in some obvious way, I assumed they were cheating. Maybe some of them were.  But I’m pretty sure most of them weren’t. 

For the first six months or so after my diagnosis I could have been that person – the one who appeared perfectly able-bodied and had no business pulling into the handicap spot. 

What you wouldn’t have been able to see is that all of my muscles were weak and my pulmonary function was nowhere near normal.  My autoimmune disease weakened my diaphragm, so any exertion resulted in severe shortness of breath. 

When I was strong enough to drive, my husband suggested that I get a handicap tag. 

I refused. 

Why? I didn’t want people to think that I didn’t really need it. 

What did I do?  I either avoided driving or had my husband or one of my girls drop me off at the door and then park the car.  Or I avoided going places.

I had decided that the opinions of people I don’t even know were more important than making my needs a priority.

2. We believe we should feel guilty asking for help.

As parents (or any type of caregiver) we’re accustomed to taking care of other people.  It’s our job.  We expect it of ourselves and others have come to rely on us. 

The role reversal isn’t easy – emotionally.  We have to surrender our care to someone else.

When I first got sick, I had to rely on my family to prepare my meals, help me get up and down the steps, accompany me to all of my appointments, pick up my prescriptions, and help me get dressed.  I couldn’t even put a coat on by myself. 

I remember one morning when I showered – which happened once a week because the weakness and fatigue were overwhelming – I was determined to get dressed without any help.  I did it.  But it took me an hour and a half and I was exhausted for the rest of the day. 

I had decided that asking for help might be too much of a burden on my family, and too much of a threat to my independence.

3. If we tell people we’re sick they might think we’re weak.

This one is complicated. But let’s be real, we still feel that many of our illnesses are stigmatized in some way. So we may try to hide ours. 

We don’t want our friends, coworkers or others to know that we’re in pain, or anxious, or unable to do some of the simple things that most people take for granted.  And if we’re not hiding it, we’re at least downplaying it.  

Last year the company I worked for was acquired. I spent a lot of time working from home but have been going into the office more regularly.  I’m still getting to know my new coworkers and most don’t know about my disease.

A couple of months ago we had a team lunch.  We walked to a restaurant a few blocks away.  I struggled.  I had difficulty breathing and it wasn’t easy to keep up the brisk pace.  By the time we arrived I was completely out of breath but trying desperately to hide it. 

I had decided that it was better to suffer than to risk them knowing that I have physical limitations. 

4. We think if we try to “push through” physically and/or emotionally we’ll get better.

“Maybe I’m not trying hard enough! I should be able to do this.  I just need to push myself!” Famous last words.

I was home alone one morning and dropped something on the bathroom floor.  No problem!  I’ll just bend down and get it!  Except I couldn’t get back up.

I crawled to the tub and tried to get enough leverage to pull myself up.  No success. I crawled into the hall and then into my bedroom and tried to use the chair.  That didn’t work either.  I finally managed to pull myself up using the bed. 

One of the hallmark symptoms of myositis the autoimmune disease that I have, is muscle weakness.  One way this manifests is difficulty getting up from a seated position.  So if that’s difficult, why would I think that I could get up from the floor? 

I was being stubborn.

Or living in denial.

Or just being plain stupid. 

I had decided that it was more important to be stubborn than to accept that my body wasn’t able to do many of the simple things everyone else can do. 

5. We resist making changes that might make our lives easier.

Why? Because we believe that if we make any concessions we are giving in to our illness. 

We think that by giving in – even a little – we’re giving up, and if we give up we’ll never get better. 

When I was at my weakest I knew that there were simple tools that would have enabled me – a cane, or one of those devices that allows you to pick up things from the floor without bending down.

I bought a cane but only used it briefly and only in the house.  I refused to buy the grabber thingy – the very tool that would have saved me from the desperate crawl I just described.

I had decided that it was more important to deny that I needed assistive tools than it was to help myself function better and have more mobility.

Our illness might be invisible, but we don’t have to be.

These assumptions we make – and we do choose to make them – serve one purpose:  they make us feel that we aren’t worthy; that we’re no longer “enough”.

They hold us back.

They impede our healing.

One of the absolute truths about invisible illness is that if we’re not careful we allow ourselves to become invisible. We can’t easily navigate the world we knew so we hide from it.

When we are ill, and even when we’re not, our first obligation is to take care of ourselves.

We’d give that same advice to anyone else.

Give yourself the grace you need. Give yourself the gift of being honest about what you can do right now. 

Know that one of the most important relationships you need to forge is with patience because healing takes time. Be kind to yourself in the same way that you have been to all of the people that you have taken care of.