Accepting My 'Failures' When My Disease Progresses and I Lose Abilities


When living with a chronic illness, especially a degenerative one, one of the hardest things to get used to is the gradual loss of abilities. It can happen overnight. One day you open jars, the next you’re just too weak. Or, it can happen gradually. Like when you notice you’re carrying less and less on each trip into the house after shopping. This is the nature of chronic illness and it is probably the one thing our friends and family understand the least.

Take the recent vacation I just took with my husband. (Recent as in I’m on the plane flying home as I type!) Being that I have been fighting my disease for 21 years, we have been on many trips together requiring air travel. No, it’s not easy for me, but I know what I need and so does my husband. He’s more than willing to pick up the slack.

But this time was different. This time I failed.

 

Usually, I am able to walk to check in, rest, walk to security, go through the disability line, rest and get to the gate. Even in larger, busier airports I have been able to accomplish this. But today at McCarren Airport in Las Vegas, I did not. I made it to the security check point and I crashed. The line was so long and I was so tired and dizzy and achy that I called for a wheelchair. And then I cried.

I know that doesn’t sound like such a big deal. I have a condition that causes pain and breathing issues and now I have near constant pain from back fractures. But mentally, I just wasn’t ready to take that step yet. And I’m still struggling with it.

Now I know this isn’t really a failure and that by using this word, I am being exceptionally hard on myself. But the reality is that for many of us, the chronically ill who are used to being able to do certain things, being able to meet our own expectations is vital. In my mind, it means I’m still winning. Even though I know that someday I may not be able to do whatever it is I am attempting, as long as I can do it that day, all is right in my world.

So back to my “failure.” I know that year after year, I will lose my ability to walk longer distances and stand for long periods of time. I had actually prepared for having issues with this in and around Vegas itself due to the heat. But I did well with my walk, rest, drink strategy so it did not occur to me that the airport would take me down. But it did, and I have to face it. I have to accept my failure.

However, in doing so, I will also be accepting myself. My continually evolving physical self. And as a chronically ill person, that is a necessary process. Each and every time my disease progresses or I finally have to give in to another loss of abilities, I have to accept my new self. And that’s OK. Because it’s actually a process everyone should go through as they age. It’s just that healthy people can try to avoid it or put blinders on while I cannot. And truthfully, ignoring these changes can be really dangerous.

So although I’m still not fully on board mentally with my body’s decision to shorten my walking distances again, I am dealing with the realization that I am at another stage in my disease process. And I am OK with that. That’s how this all works. I knew that from the beginning. And at some point, I’ll realize it’s hard enough fighting this monster of a disease, I need to stop fighting my mindset about it as well. After all, that wheelchair ride was pretty darn restful! And my attendant was a riot! (They didn’t let my husband push me.) So in reality, what’s wrong with making my life a little easier and not putting my body through quite so much when I travel?

I want all of you out there who question yourselves when you need special accommodations or worry about how others perceive you when utilizing such accommodations to just stop. Put all that down. We are all fighting whatever illnesses, conditions or disabilities we have already. Physical or mental. It’s time to stop adding unrealistic expectations and guilt onto that as well. Deal?

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Thinkstock photo via Noel Hendrickson.


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