Why They Don't Know

           It is hard to determine why it took so long, but I finally realized an important principle about having a disability that is not easily detected by others. Those of us with invisible disabilities know what it is like for people to overlook, minimize, or even doubt that we struggle with a legitimate disability. After all, “You look fine” is the reason for all of the confusion.

            There are two ways we can approach our disability. We make it visible all of the time by making it a primary part of our conversations, and by acting the part. Or, we only talk about it when we have to, and we try to look as normal as possible. I am one of those in the later category.

            I don’t want my issues to be the topic of constant discussion. I want to live my life as well as I can, and try things I know I shouldn’t do. It is a part of who I am and I pay a painful price for doing those things. I get tired of constantly explaining why I must be excluded from activities, or I don’t feel good today, or I need to rest, and recharge my battery (literally, I have to recharge the machine implanted just above my hip twice a week).

            It is not a matter of pride that I hide my disability as much as I do. I just don’t want to turn my issues into other people’s burden. I don’t want to put myself in the position of having people judge me, or think they can give me advice to instantly solve my problems. Then, there are the people who think they can match my issue with their own issues (which almost never stack up). Comparing Stones to pebbles rarely leads to a positive conversation, so I stop talking about my issues and spend my time sympathizing with theirs. People would rather talk about themselves anyway.

            So, here is the important principle that I have discovered. People are not very sensitive to my disability because for the most part, I don’t want them to be. Their responses are my own doing. I should not be bothered by how they respond. It is a byproduct of trying to look and act as normal as possible.

            It does bother me at times when people are not very sensitive. I can get discouraged like every other person with an invisible disability. But, I constantly try to put the whole thing into perspective. In fact, I try to be happy when people tell me that I look fine. It means that I am, in many important ways, “fine”. Their surprise means that I am having some success at being a “normal” person. It means that I have succeeded at not making my disability the main part of my identity. People who really know me understand, and are very generous with their support. To me, that is all that matters.

I'd Rather Be Hopeful than Hopeless

It has been six weeks since the neuro-stimulation implant procedure. People have been telling me that it will give me a whole new life. "How do you feel" they ask? I feel like me, with swelling in my back, and two new scars. I knew that I would not be able to judge any difference until I passed my mandatory recovery period, and I could take my back for a test drive.

Well over the weekend, I got out with my wife, and my sister, and worked on a project in the back yard.  I should say that they worked on the project and I mostly coached.  All I did was make a few cuts with a circular saw, then sat and watched as they did the heavy work.  The end result is that the project is finished and beautiful.  I, on the other hand, am in pain.

Here is what I have learned from my weekend.

First and foremost, I have learned that people with disabilities are truly blessed when they have family who are supportive and will do anything to help. No complaints, no criticism, no questions, just loving support and encouragement. I could not ask for a better support system than I have around me. It occurs to me that I have a choice to be blessed by their love, or be depressed that I can't do something.  I chose to be blessed.

Secondly, medical procedures may help you cope with your disability, but there is rarely a magic bullet.  Does the procedure help? Ultimately, yes. Is it perfect? No.  Again, I have a choice: be bitter at the medical profession, frustrated at my lot in life, and angry that nothing seems to cure the problem, or happy for the relief I did get, grateful that I have a good life (in spite of the problems), and content with what I am able to do. I chose happiness, gratitude, and contentment.

Thirdly, I have come to realize that my disability is a permanent reality. I am not going to wake up one day and have it all become a distant memory. I cannot afford to dwell on it, complain about it, or expect everybody to understand my issues. I don't need to worry about those who criticize, misunderstand, and sneer in public because they do not understand my disability.  The burden I carry is heavy enough without piling their opinion on my back too.  I chose to make the best of my life, within the limitations that have been set for me.

Finally, I know that a large part of coping with my disability is my own attitude toward it. If I am hopeless, how long with my family continue their unwavering support? If I am bitter, how many doctors will continue to search for acceptable treatments?  If I am hopeless then what will be the quality of the life I still have control over?  I will have down days, but my attitude will help determine how many of those down days I will have.


I remember visiting an older friend in the hospital.  His diabetes was so bad that they eventually had to amputate his feet.  His family was concerned about his attitude when he came out of the anesthesia, so they asked me to go in first.  I will never forget what happened when he woke up.  He looked down the bed, and say, "Wow, isn't that wonderful.  I can lay flat in bed, and my feet don't mess up the covers anymore."  I want his attitude, and that will happen only when I commit to being hopeful and not helpless.

You, of all People, Shouldn't Judge Me

So, here we were, at the airport ready to board a plane. I had just been through a spinal neurostimulator implant. I was wearing a back brace because the surgeon told me that I needed it for a while. In my hand was an early boarding pass because I needed a certain seat on the plane.

Just before boarding began, a woman pushed herself in front of me, saying that she needed to board before me, because she had a bigger need than me. "Believe me, a little back brace is nothing compared to what I have. You wouldn't want to be me" was her exact statement. After a little banter she agreed that my condition was a little more than a back brace, but she committed to remain in front of me in line.

I was struck by the prejudice people with disabilities face on a regular basis. We are judged by how we look on the outside, and the possibility of hidden disability is dismissed as unimportant. But, I was dumbfounded by the insensitivity of this woman with a hidden disability of her own. She wanted to engage in a "pissing" contest over who's hidden disability was worse. Unbelievable!

If you have a hidden disability, you know what I am talking about, and I am certain that you have stories of your own. To you I offer this statement. I respect you, and all of your struggles. I do not need to compare notes and prove that I am better off, or worse off, than you. It is not about degree's of difficulty, but about mutual support. You struggle with your disability everyday, and you don't need to be judged by others who live under the same scrutiny.

Do you have a story where you have been unfairly judged?  Share you story with others.  Write a comment, and share your story with others.  Le't see how widespread this problem is.