Am I Disabled?

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I can’t even remember how the conversation started. I was lying on the couch, and he was sitting on the love seat.

“Am I disabled?”

“Yes.”

“No I’m not! Am I???”

I guess maybe I am. I just don’t want to be. The thought of that term applying to me, the thought of being label as “disabled,” scares me to death. The short conversation, and then I burst into tears. Tears I didn’t even know were there.

Can I admit that I have probably purposefully kept myself from thinking through this term and deciding if it applies to me?

There was a short discussion a month or so ago about an event where parking would be limited. Suggestions of a disability parking placard were thrown into the conversation, and I quickly responded I was not in any way ready for that.

And today, this conversation comes out of nowhere. Well, if I’m being honest, it didn’t come out of nowhere. The question has likely been lurking below the surface, finally to come out for air as my limitations become more obvious and increasingly more permanent.

I looked up the term disabled today, hoping that maybe, just maybe, I would fall outside the bounds. Unfortunately, the definition was broad and generalized.

“A person having a physical or mental condition that limits movements, senses, and activities”

Yes, yes, and yes.

I am a person. And I have a physical condition that definitely limits my movements and activities. But, I still feel the broadness of the term is a bit tricky. Certainly there are levels and shades of limitations, and at what point do you fall into disability?

Someone tell me what to do with this information. Do I embrace the term, accept it, and move forward? Do I accept that I am at least temporarily and partially disabled, with the hope that I will crawl out of the bounds of the term and gain back my ability to engage in lost movements and activities? Or, do I adamantly resist being labeled disabled for now? After all, I can walk for up to 10 minutes, as long as I rest on ice immediately afterwards. I don’t need mobility devices to get around. As great as my limitations are, many others have it much worse.

I do have a few thoughts on this. The first being the importance of maintaining every semblance of normality I am able. As best I can I still do the shopping, cooking, and as much cleaning as I possibly can. I stay up and about for as much as the day as I am able. I have had friends offer to take over parts of my cleaning, but I declined because the more I give up and the more I stop doing things that are hard but still possible, the greater chance of losing what I have. Resisting a label of disability is a way I can cling to normality, with the hope that one day normal may return.

The second thought being, perhaps these are not even the right questions. Perhaps there is little importance whether I decide if I am disabled or not. Perhaps terms are unimportant, and it is much more about how I handle this life I have been given. No matter what I am called, or what terms do or do not define me, my identity is not found in my abilities or limitations.

What do you think? Have you had a similar struggle wondering if this term applies to you?

23 responses

  1. Of course I have similar struggles and I am probably even less limited than you are! I think it is important to do two things: 1) Hang on to what normal we still can and 2) Accept what we can no longer do. Both things present their own set of challenges. I loath the word disabled because to me it means inoperable and I am not inoperable. I just have to learn to do things differently, allow for more time and learn to say no some times. You are not alone in asking these questions…I do it all the time. I don’t want to be defined by my limitations either. I think that’s normal. YAY! LOL!

  2. Wow. I can see how that is a hard blow to your definition of who you are. I haven’t had to make this decision because my pain is nerve related and does not limit my mobility. I consider myself lucky that way. But I did quit my job because of it yesterday so would that make me disabled too?
    I think as far as the term goes it’s just a label. We like to label things as people and it’s caused so many problems for us. I say screw the label. You are who you are, limitations and all. You don’t need to be defined by your pain if you don’t want to.
    However logistically I say grab the little blue sign for your car and enjoy the available rockstar parking!! You can call it that if it helps. Especially if it means you can make it all the way through your shopping without hurting yourself.

    • Oh my, I’m so sorry you had to quit your job yesterday. That must have been so hard! This pain makes us give up so much, and that is truly something to mourn.

      That is a helpful distinction you make – we don’t need to take the label, but we can accept the logistical aspects of what is offered when movement is difficult.

  3. Agreed, it’s so very important to hang on to what normalcy there is left in chronic illness, because it is a great struggle to get activities back once they are relinquished… but at the same time, what do you do when something you were clinging to becomes truly impossible? I had such a huge struggle with being laid off for my inability to participate at work, and oh man, I did not want to give up driving! But then I almost hit a car and I did take out a mail box and I realized it wasn’t about me anymore. As much as I wasn’t ready to adopt the label of disabled right then and there,
    I had to accept those losses and grieve them out and then yeah…. think long and hard about whether or not any of the things I had lost defined me as being disabled. I cried so hard when I submitted my disability application… I even wrote in the box that they provide for extra notes on the back that I didn’t want disability, that I wasn’t ready… so no wonder I was denied the first round! I just couldn’t make that leap yet. It equaled a loss of self-esteem to admit my disability. I’m happy to say, not so anymore! Now that I haven’t worked for about 14 months, and had quite a few forced months off in the year before that, I don’t wonder if I’m disabled… I probably am. Not as much as some, but my limitations are just a little too life-altering to pretend otherwise.

    I recently have been reading a lot about not holding your suffering at arms length, but instead bringing it in close, hugging it to your chest in order to find balance that way. I’m just as hesitant as you are to really wear the label, but maybe if I bring it up close to me, I won’t be so afraid of it. None of this is easy, I’m sorry for the things that you are grieving the loss of in your life. I know that I definitely hope I will crawl my way back out again, even after deciding that yes, that label probably does apply.
    I don’t know if i will ever really think of myself as disabled, though… I am always going to find a way to be me, and disabled isn’t what I think when I think of the things that define me.

  4. Wow! What interesting thoughts this post provokes. It definitely made me do some introspection. I fit every “criteria” of the broad textbook version of disability, but I still work. I mean, I have a job. I probably wouldn’t if it weren’t for the legal protections of intermittent FMLA because I miss a lot of work. I have no choice but to work, until someone tells me I can’t (meaning unless I eventually get fired) because my husband is 100% disabled and would die without the medication and treatment that our health insurance and my income provide for him. To be without it for even 1 week or 1 month would be more than he could endure. He doesn’t like the term either. We are in the process of applying for disability for him and he has told them on more than one occasion that he doesn’t want it. It’s true, he doesn’t want it, but we desperately need it. He needs a way to be financially self-sufficient in case something were to happen to me or I were to lose my job. There is a certain permanence to the word and the process of applying for government benefits. Even though it feels that way, I guess it doesn’t have to be. Someone might be disabled today but find a treatment, remission, or miracle cure that allows them more ability in the future. While I can still work, that is ALL that I can do. It taxes my body and mind so hard that cooking and cleaning are no longer an option. My parents have started cooking and delivering meals to us. That feels like a sign of disability to me. I feel, in reality, that my husband and I are both disabled, but I’m fighting it with every ounce of my being. Not so much because I fear what the word implies, but for our survival because if I were to fully admit my limitations, I don’t think we would survive very long. My job and the health insurance is our life-line. I really struggle with the pressure of that because I feel that if I fail to perform well enough to keep my job, I am essentially killing my husband. I hold his life in my hand and the stress and pressure of that is almost too much to bear. Thanks for this thought provoking post. 🙂

    • Hi! You bring up so many great points. First of all, I think you are absolutely incredible. I can’t even imagine the amount of strength it takes to carry that level of burden. Seriously, no joke.

      There is a point when the question of disability becomes a somewhat legal term, and that is something I am wholly unfamiliar with. It sounds like you are figuring out that process with your husband. For me, I don’t want to be labeled as disabled, but right now I can barely keep a full job – I was doing it by the skin of my teethe and then dropped to part time. I am blessed to have a husband who supports us financially, but if I did not have that, what would I do? I would probably want the disability label from a legal sense at that point so I could apply for disability. From the little I have heard, I feel pretty sure I would not be approved. I know nothing about the process, but it seems so difficult for them to believe you actually need it.

      I think what doctors and others don’t realize is how much of a beating our bodies can take while we still “function” – you point that out so well when you say you keep going for your very survival. You are in such an incredibly tough situation, and I admire you so much!

  5. A reason I have thought about this whole concept is that it would be so nice to have a parking pass so that I can save my energy for whatever it is I’m doing once I park, and not have to waste energy on a long walk from a parking lot. I too am fortunate that my husband provides for us financially, because I would not be a very reliable employee when flare ups occur.

    I had a humbling experience when my family went to Disney several years ago. I had a severe case of plantar fasciitis, and was forced to rent a scooter for the entire week we were there so that I could get around. Wanted or not, I was labeled with the term “disabled.” My experience ranged from getting judgmental looks from strangers (because I looked “normal”) to preferential treatment by cast members. Very humbling.

    • Oh my that does sound humbling. I am most terrified of having to show my disability around people that I know. I look so normal and so healthy, so of course people would be wondering and confused. I need to get over this fear of other peoples’ opinions and fear of what other people think of me. I have this overblown need to prove myself and my pain, when I should be confident that if the Lord knows and sees, that should be enough. And he can give me confidence to explain as needed to those who ask.

      • I’m right there with you…fearing what other people think of me. I hate feeling “high maintenance” when I can’t sit on the bleachers without my stadium seat or when I search for my special blue chair at church for Sunday School or when I can’t climb the hill to my son’s soccer field and have to walk all the way around the field to get there. But, as I was typing this, it occurred to me that I need to be grateful that I can at least get out to do these things, despite the degree of maintenance required.

  6. For quite a long time I refused to accept that label or even consider it. Gradually over time though I noticed that I started using the term to describe my situation. By that point a level of acceptance had been reached. I couldn’t drive often and I had gotten a “disabled” parking placard from my doctor. For me, accepting the term was freeing in a way. Although I continue to have hope I was able to quit fighting so hard against the reality of my physical situation. Not sure if that makes sense or not. Most recently as my condition has decreased I have started to use the term when telling others about my condition and have found this helps to get others to see the gravity of my situation. I am not using the term lightly and not for sympathy just realizing it is time for the people around me to accept where I am at. Thanks for this great post.

    • That is helpful to hear you say that it was freeing to accept the term disabled. All of these comments are helping me thing through this. I think at this point in my condition, I am partially disabled for at least the time being. I am not fully disabled, as I can still do much for myself. And perhaps one day, I will not be disabled at all, but for now, I think it is accurate to think of myself as having a level of disability.

      And that totally makes sense how using the term helps you accurately explain your situation. Right now, when I talk about my chronic pain, I know that it is difficult for people to understand or have a picture of what that really means. But disability is a term that hold more meaning for people – I may be close to the point of using that term to help people understand. Thank you, this is helpful.

  7. I think this is an important conversation. We are stronger when we advocate as a team. And our team might be disabled. We have many differences but I find that most people in the cancer community wont wear the term, like it’s a step down. That is a bad sign. I am disabled by my cancer. It sucks. And life is great.

    Marcy Westerling
    http://livinglydying.com/

    • Your thoughts on this are helpful. Still thinking through this for myself, but I think you are right that it is a bad sign when people do not want to wear the term, when in fact they fit into the category or “team.”

  8. Yes, I really have. I don’t look disabled. I would feel funny driving into a disabled stop and getting out of the car looking very abled body, but then sometimes I can’t make it back to the car, it seems to far away and my legs won’t move. And yet I struggle with the term being applied to me. It means no longer being able and I really hate that idea.

    • Oh my goodness, I can so relate to all of this. It is so hard putting that term to myself, but I want to move past that. I want to be ok with who I am and not worry what others think. I want to be honest with myself that I am not physically able as I used to be, even though it is so painful to admit. That is where I want to be, but I don’t know how to get there quite yet.

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