Understanding Invisible Illness: Walking in Our Shoes

Before I got sick with fibromyalgia I had no understanding of invisible illness. I would look at some of the people I’d see using handicapped spaces or the electric carts at the grocery store and think “they don’t really need that”.

I once had a discussion with my (then) husband about how one day I may be the person who needs that handicapped space, cart, or wheelchair (and how there were days even then when I felt I could use those tools). Even after all he had been through with me he still felt that a large percentage of those who use those tools don’t need them.

How could he believe that I need those tools if he can’t believe that others do? This is the battle we must face. Our illness is not obvious, our need for help is not constant, but it is real.

It was during this time, when I was still struggling to understand my illness and my needs that after several rough weeks with nerve pain, and feeling awful, I was finally having a good day mentally. A day when I wanted to get out and enjoy time with friends. I so wanted to go and enjoy their company, but everything hurt. I hurt so bad I could barely move,  let alone drive.  I told one of my friends, “I feel good, I feel up to getting out, I just feel like I need a wheelchair!” and it was the truth. Had I not been going somewhere where I could sit down whenever I wanted or needed, I couldn’t have gone at all. Had I not been able to get my husband to drop me off and pick me up, I couldn’t have gone. However, to those who saw me out that night I looked just fine and if they didn’t know I was in pain because had I not told them, they never would have known.

Over the years, I’ve read many stories from others in similar situations. I think of the young woman getting on a public transit bus and showing her disabled card only to have other riders harass her for using a disabled seat.

And, there have been so many stories of people parking in handicapped spaces (for which they have the proper placard) and others walking by, making comments, or even attempting to report them for using those spaces, simply because they look young and healthy. 

As a healthy-looking 30-something, I avoided using the electric carts even on days when I probably should have used them, because I didn’t want to deal with any negativity that might arise because I looked healthy. I preferred to stay home and go without than to see those looks.

On the days I felt bad enough to want to use those carts, I didn’t really feel good enough to drive anyway, so I had several reasons to just ask my husband to go to the store instead, or to wait. But, we aren’t all lucky enough to have someone who can go to the store for us, or the luxury of time (to wait and go later). Sometimes we need something now and we don’t have help. 

It’s easy as a healthy person to look around and judge others, and to think that you’d never do that (whatever that may be). Yet, one day it may be you. It may be you that needs help, that needs to use a can or an electric cart. And, at that point I hope that the stigma and judgement against those who live with invisible illness is gone so that you can easily access the help you need without feeling shame.

Please have compassion for those around you. Don’t park in the handicapped space that you don’t really need. Don’t give unkindly looks to someone you see in the electric carts and assume they are just using it because they are “fat” or “lazy”. There is more to that person than you know. Don’t assume that just because someone else looks healthy that they are healthy. You don’t live in their shoes and you don’t know what might be going on in their body. Know that most likely this person did everything they could to avoid having to use these tools before they caved in and did so.

If you are sick, whether you have fibromyalgia or some other illness, don’t let the ignorant people in the world control your actions. This is advice to myself as much as to you. If you need help, ask. If you need to use a tool, use it.

It is our pride in not wanting others to look down on us or question our motives that keeps us from using the tools that are available to us. Not using these tools is often what makes us feel worse. Not using the tools and assistance that is available to us makes us more likely to overdo it. Because we don’t use the tools that could help make our lives easier,  we use more spoons than we need to, making tomorrow a worse day than it should have been. We pay for our pride through more pain.

Tomorrow’s pain is not worth avoiding demeaning looks. Yes, our mental health is important too, but hold your head high and know that these people do not walk in your shoes. They do not know you or your story, you do. If someone questions you, don’t hesitate to speak up and let them know why you are there and doing what you are doing. It’s not about defending yourself, but about informing them of their ignorance.

Stop the ignorance. The only way this ignorance will end is if we start sharing our stories and making people understand that there is more to us than what they see on the surface and sometimes just because we don’t look sick doesn’t we aren’t.

Related Posts:

• You are more than the broken piece of you
• Why is it So Hard to Ask For Help?
• The Person Who Decides If You Need a Mobility Device Is You
• Who are we to judge another’s illness?