What Being Disabled Means To Me

RA Guy Adventures of RA Guy 13 Comments

“The only disability in life is a bad attitude.” -Scott Hamilton

disabled_blueA few days ago, a long-time reader of this blog sent Rheumatoid Arthritis Guy an email, asking him how what he thought it meant to be disabled. I have asked myself this same question many times during the past few years, and felt like I did not have a good answer. However, I have been thinking a lot about this question during the past few months, and finally feel like I have come up with an answer. Whether it is a good answer or a bad answer is of less importance to me…what matters most is that I have an answer with which I am comfortable.

But before I provide my answer to this question, let me first talk about the process I took to reach the point where I currently am.

When I was diagnosed with rheumatoid arthritis, I clashed against the label of “disability”. (Having just been diagnosed, this was not the only thing I was fighting against.) For all of the grief that I sometimes give others about comments suggesting that I am too young to have arthritis, I found myself doing the exact same thing to myself. “I am only in my 30’s…I am too young to have a disabling disease.” Silly me, as if disability had anything to do with age! So, along with many other aspects of my illness, I shelved any thoughts related to disability. My perception of a) who I was and b) what it meant to be disabled just did not match up in my head. (Never mind that I had completely lost the use of my left knee and was only able to walk short distances with the aid of my crutches.)

Throughout the years – between the time I was diagnosed, and this past year – I often found myself revisiting the question of what it meant to me to be disabled. I continued to have ups and downs, but the period between cycles was much longer than what I am currently experiencing. (I got quite used to what I called my 3/1 cycle: 3 good months followed by 1 bad month, 3 good months followed by 1 bad month, and so on.) During the bad months I started relating a little more to the word “disability”. But I was still quite confused. So I’m disabled one month, and then I’m not disabled for three months? It just didn’t seem to make sense.

I still didn’t have my answer. But, at least, I continued to ask what being disabled meant to me.

A few months, I had a period where my hands and wrists got so bad that I started losing not only my ability to move them, but all the strength that they normally embodied. I could not cut my own food. Raising a fork to my mouth was excruciating. I stopped drinking water during the day, only later to realize that my reason for doing so was that the drinking glasses I own were too painful (that is, heavy) to lift. All of these struggles, on different occasions, led to multiple emotional meltdowns.

It was around this time when I started forming a strong professional support group who could help me move through the ups and downs of living with rheumatoid arthritis. I found a new rheumatologist. I started seeing a psychologist. I started regular physical therapy sessions. There was one suggestion that I received from numerous individuals: “Why don’t you look into assistive devices such as special cutlery, knives, and other aids that will make things a little easier?”

What the {insert expletive of choice}???

I couldn’t possibly do such a thing. Doing so would mean that I was…well…disabled.

But I decided to give it a try. Having my physical therapist mark up a Sammons-Preston catalog during my first visit, and then asking me to take it home to give her suggestions a closer look, did play a large role my decision, I must admit. I’ll never forget the emotions that I felt as I flipped through the pages that evening. My head spun. I had difficulty breathing. My anxiety levels were obviously increasing. To me, ordering these products would mean having to accept that I was disabled. I was not completely comfortable with these feelings, but I placed my order anyways.

A few weeks later (I currently reside outside of the U.S., don’t forget…) my products arrived. By the time the package arrived, I was already eagerly (could it be?) awaiting its appearance. I had given myself time to think about the situation, and in doing so I had already begun to envision how these aids would make my life a little easier.  With a little hesitation still, I started using my wide-grip cutlery and my special knife. I purchased a couple of plastic tumblers to use instead of my heavy drinking glasses. Low and behold, things were so much easier! I was no longer concerned about what my using these assistive devices might mean. Instead, I was focused on my new found sense of empowerment that these items were providing me! I could cut my own food. I could lift a utensil with new ease. Taking a sip of water was no longer synonymous with sharp jabs of pain in my wrists.

So I might be talking about knives and forks and cups, but to me this is how I identify with being disabled. To me, being disabled means recognizing and accepting my limitations – whatever they may be or however long they may last – so that I can do what is necessary in order to compensate for these limitations. By doing so, these limits diminish, and the empowerment returns.

I am no longer afraid of the term “disability” because I think it might increase my sense of loss and limitation. I now accept the term “disability”, because I know that by doing so I am speeding ahead. Nothing – not even the fact that I live with rheumatoid arthritis – is going to hold me back from doing what I want to do.

A week ago yesterday, I was going to my evening Aymara foreign language class. It was the last day of the first module, which meant that we were having our first exam. I was going through a particularly painful episode at the moment, so trying to review in my mind what I had studied was proving to be quite difficult. I started to feel sorry for myself. “Compared to the other students, I have such an unfair advantage, having to take this exam during a bad flare. Let’s not even get started with the fact that I am the only non-native Spanish speaking student in class, the language in which the class is being taught!” I felt like I had two strikes against me, before I even started taking the test.

But right before I stepped into the classroom, I realized the futility of moving forward with this negative attitude. I told myself that I was going to do the best that I could, and with that I would be happy. After all, all I could was my best, and nothing more.

When our exams were returned, I was surprised to see that I was the only student who received a perfect score – 10 out of 10! I share this information not to boast about my academic success…instead, I use it as a recent personal example of the following lesson: many of the limitations which I perceive in my life can easily be overcome with a positive attitude and a determined mind.

This is my disabled life.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 13

  1. Lana

    “I am only in my 30’s…I am too young to have a disabling disease.” Silly me, as if disability had anything to do with age! So, along with many other aspects of my illness, I shelved any thoughts related to disability. My perception of a) who I was and b) what it meant to be disabled just did not match up in my head.”

    Wow, I know that feeling. I still struggle on this issue. I can’t sit down for long periods without getting up to pain when walking. Sometimes, it feels like my hands just don’t work, and because of that, I have my own emotional setbacks.

    And I can relate your comment on your exam. I am working on my master’s degree, and despite working full-time, attending school part-time, being a working mother, and all the other chaos in my life – I still maintain a 4.0 G.P.A. How can I feel disabled or be disabled if I can do all these things?

    I think persons with physical limitations are stronger and more determined than persons without. I guess that makes us unique.

    And Yes, You’re right: All we can do is our best.

  2. jodi

    RA Guy, you are such an inspiration to us all. Thank you so much for your positive attitude and your wonderful posts.

  3. audrey blakey

    I just love reading your comments, I am now quite elderly with OA, and have two knee replacements. I have been in voluntary work most of my life and try to keep positive. Your remarks inspire me on the odd “bad” day, so do keep posting Mr.R.A

  4. Carol

    Know just how you feel. I would encourage all of you who need it to consider a handicapped parking placard. It was very difficult for me to admit I needed one, but it makes such a difference on those bad days.

  5. dandy_candi

    It’s like your reading my mind Rheumatoid Arthritis Guy!

    I have had RA for 10 years and just in the last few months I have come to terms with the fact that I do have a chronic disease and its not likely to go away so I might as well use these “tools” to make my life easier.

    I too battled with the concept of “disability” for a long time, much longer than you did, but have finally decided to accept it.

    I’ll buy a can opener, and a wrist brace, and have a nap in the afternoon if I need to. I might even apply for a disability parking permit (the one thing that I told myself I’d never do!)

    At 22 years old, and already significant damage to my joints, I want to preserve what I can of my joints from now on so I can live a long and fun life doing things for myself!

    I don’t care for labels, but if you want to call me disabled then go ahead! 🙂

  6. Martha Alonso

    HI, RA guy. I just got done reading your story. I always thought I was an optimistic person my self, not so much lately. With every agonizing keystroke I think you’re an inspiration. I was diagnosed with RA when I was 25 yrs old. I am now 36 years old. I have tried to stay positive all these years but I am losing that positive sprit with every year that goes by. I recently had a complete shoulder replacement and might have to have wrist surgery as well. I’m a medical assistant and I love what I do. I have always enjoyed helping people but lately I can’t even help my self. I have a disabled placard in my car and I also have had my share of stares and the finger pointing. I am amazed how people are so quick to judge a person. I wish I could reach over and touch someone on the arm So that they get a sense of what type of pain I am in every day of my life. Maybe then they would not be so quick to judge me. How do I stay positive when I’m in so much pain? Is there a time where you just want to throw in the towel? I have seriously considered having my Dr. put me on disability but my heart tells me otherwise. What should I do? I’m torn between the pain and my joy for helping others.

  7. Miss Waxie

    Dear, dear RA Guy,

    I know i have been LOOOONG absent…but I’m so glad to see you’re still going strong and still so positive. I really look forward to tuning into your adventures more regularly!

    I’m [finally] going back to writing about my illness via comic too and I hope you stop by and check out my latest episode whenever you have the chance.

    Good to see you buddy!

    – Miss Waxie

  8. Patty

    I love how you are able to be so introspective as to put into words what is emotional, personal loss, and previously not put into narrative. — Wait — that sentence sounds and feels very academic.
    Thanks, RA Guy, for helping us understand ourselves so much better.
    I haven’t been able to drive for 5 years due to total loss of my right foot/ankle. But, after having no major surgeries since 12/’09, some physical improvement, and psychiatric therapy and an anti-depressant, I’m ready to take my final driving test with my OT on Wednesday. I will drive with a left-foot pedal and use my walker to get around — in a new city — for a new life. It’s scary, but it’s New Life. I have to go for it!
    Painless Hugs to you, Patty

  9. Katrina

    This is so inspiring. I will be going to see my doctor soon and am going to be asking to get a disabled parking permit. I’m printing out the paperwork this week for my appointment in September. I’ve had a few people suggest it to me and have decided it will make my life a lot easier. I walk as slow as a zombie and I have to stop a lot. It’s exhausting and parking five or even three places farther away is a big deal now. It’s hard, but I need it. I have to remember I am doing this for ME, no one else. Thanks for the encouragement. 🙂

  10. Brayden McDonald

    I don’t remember what I was researching, I only got confirmation today that I have this.
    I have been trying to learn what I can, but I read this and am struggling with not breaking down right now.

    I am 25 and scared shitless of having to tell people they can’t use something because its something I had to special order to be able to just eat.

    But reading this has helped me some to cope a bit with the fact my whole life now has to change, no matter how much I want to fight this.

    Thank you, for having this on here even if I cannot bring myself to read other comments, thank you.

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