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    • #13090

      Recently I attended a rally and social event through an organization I am passionate about, which was a disability pride event. I am privileged to work alongside many children and families in my career, and many of them live with a disability such as autism, down syndrome or FASD. One of the highlights of this rally was how these self-advocates and passionate children, youth and adults do not let their disability define them or keep them from pursuing their passion, goals or dreams. It was a really inspiring event!

      Another lesson that I was reminded of as a result of attending this rally was the importance of acknowledging invisible disabilities. I often advocate for this, as I live with an illness (IPF) that is invisible to others and sometimes I have to justify my actions or choices as a result. As an example, when I park in the disability spot and do not have my supplemental oxygen with me and look young, I often receive many dirty looks about why I am parking in this spot. I don’t receive these looks if I have my supplemental oxygen on or with me, but regardless of having it; should I have to justify to others that my lung function is extremely low and I cannot breathe on a regular basis before they accept that I need the disability parking space? This is similar in a shopping mall when I have to use an elevator to go up a flight of stairs. I get looks from others that indicate they think I am just being lazy, especially if I don’t have my oxygen with me.

      It is so important to acknowledge that not all disabilities are visible, and while I regularly try to remember this as someone living with an invisible illness; I appreciate the reminder that came from attending this rally a few nights ago.

      This also got me thinking about how I identify my illness and whether or not I consider myself as having a disability now that I cannot breathe like others, and often require supplemental oxygen as my “lifeline”. If someone asked me, I’m not sure whether I’d say I have a disability due to my invisible illness. Does it really matter? I suppose the only person it matters to is you, the person living with the struggles of being able to breathe on a regular basis due to living with pulmonary fibrosis (PF).


      I am curious: as a patient living with PF/IPF, do you identify yourself as now having a disability, even if it is an invisible one?

      Everyone likely thinks of their illness differently, and there is no right or wrong answer as to whether or not you identify as having a disability. However, I’d love to hear your thoughts on this topic and why or why not you see living with PF as a disability.

    • #13109
      Bob Bradley
      Participant

      Of course it’s a disability to suffer from a rare and incurable terminal illness. I may look healthy on the outside, but my lungs are barely functioning and I’m in a very bad situation. This is an extremely serious disability.

       

      • #13121
        Charles Kocian
        Participant

        I guess not. Outwardly not needing oxygen i am not disabled. Although walking in hot humid, or cold windy conditions is really taxing.

        • #13124

          Hi Charles,

          Thanks for reading this thread and contributing your comments. It’s interesting to see each person’s preference(s) and whether or not they see themselves as having a disability. It changes for me, if that makes any sense. Sometimes I feel like I have a disability, when I am physically unable to do things due to my poor lung function and other times, when I am less physically restricted I don’t want to admit that I have a disability of any kind. It’s a hard position to be in, and for me, I find it depends on physically how I am feeling.

          I hope you continue to not need supplemental oxygen, and please take care in the humid, cold or windy conditions. Wishing you well Charles!

          Sincerely,
          Charlene.

      • #13123

        Hi Bob,

        Thank you so much for your comments and contributing to this thread. I can certainly see both sides re: identifying as having a disability and not. Some people leave out using the words disability, and instead use invisible illness. I suppose one of the factors that impacts whether or not you say disability is how much the disease has progressed, effecting your physical abilities? It’s hard to say and each person is different. Even though I use supplemental oxygen, when I am not using it, I “look healthy” and no one really knows that something is wrong with me. Then on really hot days or when I am ill, I can barely walk up an incline on the sidewalk without oxygen so on those days I would more be inclined to identify as having a disability.

        Thanks for sharing your thoughts, and I hope you’re doing alright.
        Kind regards,
        Charlene.

      • #13132
        Joyce Douglas
        Participant

        Hi Charlene.  I really tried to not feel like I have a disability. I was always trying to struggle along without my walker,  carrying my POC and being slow.  While we were visited by my daughter-in-law and other family members who put on a lovely 60th Anniversary Party for my husband and I, I noticed several people with canes, a couple of folks maybe could use a walker but chose not to, or a cane….why? We feel stigmatized I guess and it is totally wrong to feel that way. We have lived a good life, done many things for other folks, helped out those who needed it to move easier…Why not use the assists that are available for us now?  Let’s just stuff our pride and our feelings of inadequacy in our pockets and accept the help we are able to have and use it to help us look better as we walk, be safer as we walk,  be happier as we go about visiting with others.  IPF is not fun, we don’t need it to be, but we do need it to be dealt with as well as we can do that.  Just use those great inventions to help us move, breathe and sing.  It feels good and we must not be embarrassed to be doing it.

         

        • #13154

          Hi Joyce,

          It is great to hear from you – how are you doing? Thanks for writing and contributing your experience(s) and thoughts on this topic for us!

          I think the stigmatization does exist, as you say, around assistive devices that might help those of us with a disability, regardless of what kind of disability it is. I also agree with you that it shouldn’t exist – just because we need these devices is no reason to feel ashamed or embarrassed. Sadly, I put off using my supplemental oxygen when it was prescribed to me *because* of how other people made me feel. Isn’t that wild? Looking back now, I cannot believe that I didn’t do what was right for my body and my needs because of others! I got over that quickly when I learnt the hard way, and since then I agree about the importance of stuffing our pride. These things exist to enable us to live the best life that we possibly can despite our disease, and we should take advantage of these things, you are absolutely correct!

          Your post is also very timely, as I am writing a new thread about the top assistive devices to live successfully with IPF. Keep an eye open for it, I’d love to hear from you about what devices are the most helpful for you and keep on keepin’ on my friend 🙂

          Warm regards,
          Charlene.

    • #13127
      Sheila Blanchard
      Participant

      Hi Charlene, it must be so satisfying to work with children and families with a disability I admire you. As to parking close to the stores I have a disability certificate which I put on the windshield of the car I am in,you can apply for one at the office where you get your drivers license it helps a lot.

      • #13151

        Hi Sheila,

        Thank you for reaching out, for your kind words regarding my career. It definitely is rewarding, although it can be tiring at times too. I am very lucky to walk alongside so many amazing families, it is a privilege that I never want to take for granted 🙂

        I am glad to hear that the disability sticker that you put on your dashboard helps with your ability to park closer to the stores. You’re right, I should look into this as my doctor has offered me the paperwork I need for it on multiple occasions. I just haven’t filled it out yet and submitted for one. Perhaps this is because on some small level of subconsciousness I don’t want to accept I need it? I will get there though and can imagine it is very helpful.

        Thank you for sharing and I hope you are keeping well!
        Kindest regards,
        Charlene.

    • #13143
      gil
      Participant

      Joyce,

      We feel stigmatized I guess and it is totally wrong to feel that way. We have lived a good life, done many things for other folks, helped out those who needed it to move easier…Why not use the assists that are available for us now?  Let’s just stuff our pride and our feelings of inadequacy in our pockets and accept the help we are able to have and use it to help us”

      Thanks for that comment.  There  are times  I know I ought to use a mask and  I don’t for the reasons you mentioned.  From now on I will use a mask when it makes sense, such as when I go to the flea market and there is dust and people smoking.  I have to ignore what people “might” think and do what is best for my health.

       

      Charlene,

      Until you asked,  I considered IPF as an illness but if I am honest,  it  is a disability and it has already changed the way I do some activities, e.g., I no longer go backpacking and when at high altitudes I do very little  hiking.  Now I am beginning to accept the fact I do have a disability and that as time goes by I will need more assistance – difficult to accept.

       

       

       

      • #13163

        Hi Gil,

        Thanks so much for contributing your thoughts back to both Joyce and I regarding this topic.

        Joyce did raise a good point, I agree, and now I can’t believe that I did (or didn’t do, actually) certain things that would protect my lungs and overall health just because of what other people might think. Other than the occasional stares from children who don’t usually know any better, I address the looks from adults. I use these times as an opportunity to educate (when I feel upto it, as I don’t always) others about IPF. Glad you’re feeling a bit more confident Gil and will do what it is you need for your lungs, regardless of what people might think,  wonder or say.

        I also agree with you so much about how difficult it is to accept that IPF is a disability (if you view it that way, I know others choose not to for the sake of their coping). I think I consider it a disability too, for the most part, because it has significantly impacted the way I do things. If the impact wasn’t physical, I may not consider it a disability but because it is, this is why I am more inclined to refer to my IPF as a disability. Sorry we’re all dealing with this, but glad we’ve connected on these forums and found support within one another.

        Kind regards and as always, wishing you well!
        Charlene.

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