let me share this whole new world with you

there is much debate in the diabetes online (and offline) community about whether a person with diabetes ought to be considered or consider one self, “disabled”.

sharing my position on this is something i’ve been very weary of because my feeling is that it goes against the grain of the majority rule.

but alas, here it goes….

last month i celebrated the life of my dear friend hattie… at disneyland. while there, i declared myself disabled and followed where it led me…

Screenshot 2014-03-24 17.06.52

well aware that there are many differing opinions and feelings around this delicate issue, i want to first say that my perspective is neither correct nor incorrect because it really is an individual decision. i am not writing this post to convince you of anything, only to share how i linguistically cope and one of the perks of the madness.

Screenshot 2014-03-24 17.06.34
we can call diabetes whatever we want: a condition, a disease, a lifestyle, a motivator, a disability, a life circumstance, a bumpy road, anything

the language that serves me best is to call diabetes a disease. there is an organ in my body that literally doesn’t function as it should. for me, to call that major malfunction just a condition feels like an undermining of the severity of my ‘situation’.

i’m not sure i want to be a person who needs credit, BUT diabetes is a hell of a lot of work and receiving recognition for that work helps motivate the continuation of my efforts. calling diabetes a disease makes it sound as serious as it feels, as burdensome as it can be, as heavy as it weighs on the hearts of my family, friends, and life partner.

i don’t want diabetes to be something that stops me from doing anything i want to do, but if i am to speak honestly, there are things i don’t want to do because i have diabetes.

for example, i can’t get schwasted and pass out because i have diabetes, but i wouldn’t want to do that anyways because it would be dangerous for my health especially since i have diabetes.

the next question is does diabetes prevent me from participating in some activities? does it actually dis-able me?

i’ve landed on this answer: it can, when i allow it to and i am allowed to grant myself the freedom to choose when and which activities my own diabetes keeps me from pursuing.

there is no hard yes or no. there are not even activities that i x out completely, it is all on a case by case basis.

and i am going to repeat this bit because it is very important to me:

i am allowed to grant myself the freedom to choose which things my diabetes keeps me from pursuing each time an opportunity arises.

there are times when my diabetes and i decide that eating a cupcake is okay, there are other times when my diabetes and i decide that it isn’t.

being consistent to appease others only serves me so long as it serves me.

i am the only one who knows how i feel. you are the only one who knows how you feel. because of that self-evident fact, we must each be active agents and advocates for ourselves in the workplace, in school, in play. because of that, we must each wear the amount of humility necessary to live in accordance with the way we feel we want to live our lives.

we all have varying constitutions and thus our capacity to bare struggle varies. maybe joe can go to work even though his blood sugar was over 400 all night, but that doesn’t mean that i should be expected to push myself to the same degree. having a weak constitution doesn’t mean i’m a weak person, it just means i have to stay aware and feed my body what it needs to stay well.

so, yes. diabetes is a disability for me because i allow my diabetes to prevent me from doing things when i feel as though there is something i, in the moment, do not feel equipped to handle.

THUS, for me, being ‘disabled’ stands as a recognition of the fact that diabetes can be a barrier to success and serves as an allowance of time to heal when it does.

PLUS! accepting the term ‘disabled’ comes with perks like disneyland passes, national park free-camping passes, discounts on electric bills, extra care and priority picking classes in school, and more.

i haven’t always felt this way and i’m not certain that my thinking won’t again shift. for now, however, calling diabetes a disease and one that disables me in certain circumstances serves me and my self management goals.

what is your stance on this issue?
what language serves you in your current life circumstances and emotional landscape?
have you noticed any language shifts in yourself throughout your time as a person with diabetes?

please do share.

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24 thoughts on “let me share this whole new world with you

  1. I appreciate your perspective and I understand what you are saying…

    but…

    … DIABETES IS LEGALLY A DISABILITY. End of story.

    This is an important point and not an individual decision. I am willing to say it doesn’t matter as much at Disneyland (sort of) but it absolutely positively matters at school. Everyone with diabetes is entitled to accommodations. Those accommodations have to be recorded ahead of time. If you wait until you have a low or high blood sugar and try to delay an exam, the school has zero obligation to accommodate you. Wait until you fail a test because of a 350 blood sugar and that F stands.

    There are a lot of opinions related to diabetes that I don’t really care about. I don’t care if you use a pump, pens, or syringes. I don’t care what your low treatment is. I don’t care if you like Humalog or Apidra. I don’t care if you use a CGM or not.

    I care deeply that diabetes is legally a disability. We don’t have to live our lives with that mindset and act like there are things we can’t do, but we should be able to rely on that legal protection when we need it without question.

    Sorry for the novel – but again, a passion.

    • I agree with you 100%. I should have included a bit about that, but that is what comments are for! Thank you for bringing up this all important part.

      Balancing the need to accept the legal label and the desire to be/appear to be able to not let diabetes effect your life choices and actions is incredibly difficult. There is such a thin line.

      I wrote this post from an emotional standpoint. It was about getting over the emotional hurdle of accepting the label.

      I fully, no… eagerly(!) accept the accommodations I need. Everyone living with diabetes deserves them and no one who wants them should be denied them because others don’t feel them necessary.

      I’d always welcome a novel from you, Sara.
      <3 Thank you for beginning a conversation.

  2. This post completely embodies how I feel about labeling diabetes as a “disability” but could never put into words! For so long I almost felt guilty when I would take advantages of the “perks” that would come along from having diabetes, but I’ve learned over the years that sometimes doing so is necessary.

    For the first few years after being diagnosed with type 1, I felt as though labeling myself as disabled made me a weaker person. Now I realize that that is not only untrue, but it is actually the opposite — it shows that I have the strength and courage to be my own advocate.

    Thanks. Will be sharing with family & friends!!

    • Thank you for reading and sharing where you are Peyton.

      Like your experience with this, mine too has seen great fluctuations. There can be a lot of pressure from parents, caregivers, friends, and ourselves to be bigger than diabetes, to “never let it get in your way.” While that sentiment drove my desire to work hard on diabetes management, it didn’t allow the space I needed to take when things got a little too tough to just trudge through as usual.

      Seeing my last transition from there, I am really curious where we will land or transition to next. There seem to be two strong camps on this issue and a lot of gray middle area.

      Thank you for contributing to the conversation. Don’t forget to share with the #DOC how your self advocacy goes, we always like to hear how PWD are doing.

  3. As you say this is a really delicate topic. What we can all agree about is that living with diabetes is a constant daily challenge and certainly has its ups and downs. Often we want people to know how hard it is, and we all deserve praise for doing with it.

    But… Disabled is a big word. Regardless of the legal stand point, in my view a disability is a permanent impairment of mobility or mental function. As diabetics we are fortunate to be able to think and move in exactly the same way as “healthy” people. We do have periods of hi or low blood sugar and these can be debilitating. But we have to remember that they are transitory. My mother suffers from migraines and these are much more debilitating than my diabetes when they strike – but neither she nor anybody else would classify her as disabled!

    I also doubt all the professional and Olympic athletes with type one would think of themselves as disabled either! Managing BG is a burden they have which other athletes don’t, but type one shouldn’t stop anybody from running faster or jumping higher than anyone else.

    Thanks for the thought provoking post and for airing an important debate. I hope you don’t mind me disagreeing.

    • Thank you for chiming in and for reading.

      I fully respect where you are, personally, on this issue. We have to remember that my diabetes doesn’t equal your diabetes, and an Olympic athlete’s diabetes is a whole different breed from mine. Because “Your Diabetes May Vary”, it is important to accept the way others linguistically approach and cope with their own diabetes.

      I am thrilled, overjoyed, and utterly thankful to the universe that your diabetes isn’t debilitating in a way that affects your mobility or mental functioning. Unfortunately, not everyone is that lucky.

      When I was in middle school, if my blood sugar was high the night before or during a test, my mental functioning was absolutely impaired. It shouldn’t be a stretch to say that for me by virtue of the fact that an overnight high blood sugar doesn’t impair another to the same degree.

      I’m not happy to say this, but that scenario happened to me a lot more than it should have.

      I think the important thing here is that the dialogue allows for a person to choose either way, for themselves, depending on their own diabetes.

      Thank you for jumping in with the way you feel about this. I sincerely appreciate your differing in opinion. This is where great dialogue stems from!

  4. Hmmm…. many layers to the onion here. I will only say that my thinking has changed over the years, and now, if I need accommodation, I’ll take it. One other thing, at least from my life: I’ve also learned that asking for accommodations or accepting them doesn’t really seem to bother most people as much as I was originally worried about. And in the end, it’s about our safety and happiness… what could be wrong about that?

    • Totally agree. One of my passions is mountaineering. Diabetes hasn’t stopped me from doing it but I absolutely agree that you have to be open with others and not be afraid to ask for help. I’ve trained all my climbing partners to use a glucagon pen in case I lose consciousness from a really bad hypo (touch wood this never happens) and I test my blood regularly and am open about low BG readings. It’s really important for all of our safety. All my friends are totally cool with this and we haven’t stopped having fun in the mountains. They also understand when I refuse to share my stash of jelly babies and fig rolls on a big day out!

  5. For me, I hate the idea of my diabetes being a disability. But that’s tied up in so much of my own feelings and emotions. I used to have such a need to be independent, such determination to not show any vulnerability that it became too much. I found myself hiding diabetes from everyone because I didnt want to be the little girl needing help. My thinking has shifted and i know that we all need help sometimes. But theres a fierceness inside me that says no, its not a disability, its just part of who I am. Great blog post, really respect it – i can see myself thinking that way but im not there yet and im okay with that :)

    • Thank you for reading Sunshon. Also thank you for sharing your voice. Truth be told, there are days still where I teeter back and forth between being okay with calling myself disabled and not being okay with it. Also, allowing someone else to call me that is a totally separate thing. Above in the comments, StephenS said that this issue is an onion with many layers and he is fully right. We can’t just decide which side of the fence we are on for this issue and stay there. Life circumstances and experiences alter the way we feel about our diabetes and everything else. If your thinking ever changes or shifts and you want to explore it, feel free to email me. This is what I LOVE talking about. my email is heather@betaconnect.org <3 Thanks for sharing.

  6. I totally needed this today. My diabetic 4 yr old is supposed to go to k-5 next year. He has a June birthday and I would like for him to go to the state sponsored pre-school instead. I believe his numbers fluctuate too greatly to function well for k-5. I hate to ask for extra help but have decided to try and get him an IEP instead of a 504 to help In this situation. It hasn’t yet been a year for him so he is getting mdi. I am trying to get a cgm right now because he has trouble feeling lows. Thanks for reminding me it’s ok because he is disables. His pancreas doesn’t work

    • Thank you for reading and sharing your story. Asking for extra help for him will only make him feel more support and comfortable in school. I am really glad that this post gave you a good feeling today. I wish you and your son all the best as you navigate through starting school. Have you heard of the Friends For Life conference in Florida run by Children With Diabetes? It is a great place for families to learn all about advocacy, psychological aspects of life with diabetes and more. Check it out!

  7. To be honest, this is the first time in my nearly 30 years as a PWD that I’ve pondered this question! I have never considered the possibility of calling myself disabled, or my disease disabling, but I can’t fathom why not. I think being the only T1D that I knew of for many years, it was always something I felt I had to hide (a common feeling for most people with disabilities, I’m sure), not wanting to draw attention to myself or name my disease aloud. But the thing is, I wouldn’t ever have had any idea when to even play this disability card, so to speak, because I’ve been lucky enough to never find myself in a situation where I thought “I might not be able to do this; my diabetes might not let me do this.” In school it never occurred to me to declare myself disabled. And as an adult I went for a long time without even telling my employer (which is dumb, I’ll admit). So to me, while I guess diabetes IS a disability, I’ve never considered myself disabled. Diabetics who are blind, or who have lost a leg are the ones I’ve always put into the “disabled” category, as though their diabetes was different from mine, but it’s really just that theirs was less invisible. Anyway, thanks for the post! I can tell I’m going to be thinking about this all night now!

    • Thank you for reading and sharing Michelle! Based on the comments and reflections about this, it has become evident that many many people with diabetes have, like you, never seen themselves as disabled.

      I am thrilled to hear that your diabetes hasn’t limited you in any way. I think that is always the goal, but for some, like me, it isn’t always the case.

      For example, just today I walked to work and about halfway through my blood sugar fell to 50. I ate my glucose tabs as I walked, but once i got here (another mile further), I was so exhausted I had to just sit for nearly a half hour to recover. I so badly want to be a person who can move through, power through lows, but I just can’t. They wipe me out and my rebound time can be lengthy.

      It can really suck. It can be disabling. I wanted to start work right when I got here. I really did.

      Thank you for sharing your thoughts and I hope the topic continues to turn your brain. I know it does mine. It is a many sided coin.

      Cheers!

  8. Personally, I don’t like to think of my diabetes as a disability. That’s not to say anything about who’s right and who’s wrong (I believe Sara to be100% correct in what she says in the first comment), but it’s more about how I choose to see myself, and how I choose not to see less-desirable parts of myself. Or maybe it’s just a stubborn male-ego type of thing. I don’t know.

    But what I do know is that when I require special accommodations for something, I’ll try to make them myself rather than ask someone else to provide something. I’ll take the cold-pack to the amusement park rather than ask permission to store insulin in their fridge.

    Don’t get me wrong, I’ll play the diabetes-card if someone says I “can’t” do something (like bathe in a pool because my infusion set is considered an “open wound”), but I won’t do it to get something extra. It’s just a personal choice of mine. I like to think of diabetes “disabling” me in the same way any other illness would – the flu, pneumonia, whatever. It comes and goes, and while sometimes these illnesses hold me back, many other times they’re not present.

    Please don’t take this as me judging you. I make this choice because of how it makes _me_ feel, nothing more.

    • Thank you Scott. I don’t feel judged by your comment. You are a separate person, with a diabetes that varies greatly from mine. We have different brains! You get to feel about this however you want.

      This actually reminds me of something my mom used to tell me after she would compliment my sister. She would say, “Just because I am saying something nice about your sister, doesn’t mean I am saying something bad about you”

      Just because you feel a different way than I do doesn’t mean the way I feel is lesser or ‘not right’.

      Thank you for reminding me of that.

      I am glad you know what works for you, Scott. I think it is very brave of you to make accommodations for yourself as much as possible. You’re a god man.

      Thank you for sharing!

  9. Heather,

    What a great post! As someone who is new to diabetes, it’s interesting to hear all the vets talk about this issue. I’m not sure if I’ve formed a concrete opinion about it. It’s certainly got the wheels churning. Thanks for this :D

  10. Pingback: Around the Diabetes Blogosphere: April 2014 Edition : DiabetesMine: the all things diabetes blog

  11. I have been T1 for 27 years now, I am 44yo. I am now starting to consider diabetes a disability only because I have been fired from to many jobs over the years because of it.

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