Labelled Disabled. The Struggle.

More than 18 months ago I went on to temporary disability. The hope was that during that time I would get better enough to resume employment. I worked hard at it. I even tried following the crazy regimen of medication the one specialist had me on. I tried. During this time I would see an Occupational Therapist to check if I was progressing enough to go back to work. During that year she never okayed me to go back to work.

During this time however, I had a lot of time on my hands. I was seeing a psychologist who prompted me to think about certain things. I started thinking about myself. It was a slow journey but I became in touch with my true self again. I rediscovered the things I was passionate about. I got excited about being creative again but what? I tried my hand at acrylic painting and while it was fun I wasn’t very good at it. Yet it brought me so much joy. I had forgotten how much joy I found in creating things and how much of a hippie I actually was. The corporate world had suppressed that part of me over the years. I started finding different creative outlets and it was fun! Don’t get me wrong. The corporate world served me well over the years. I loved my job and it was also the reason I was able to go on to disability and still earn money.

I had started occasionally posting stories about my hospital stays. I found it fun to write about all the crazy things going on around me. It was fun to share and it took my mind off the doom and gloom of being stuck in hospital. A few people then approached me and asked me why I didn’t do this more often because they found it so entertaining. That was when the blog seed was planted. It took a while to come into being because I doubted myself. Like really. Who wanted to read about my hospital escapades! Well apparently quite a few people did! This was also a great way to keep people updated on my journey.

Before I knew it the year had passed and I was still not cleared to go back to work. My rheumatatologist was happy about this because my health had been a lot better with me not working. His intention was for me to be on long term disability so we could get me to a point of remission at least. However what came with it was the title “disabled”. I didn’t give it much thought. We did decide to make some changes because my salary was reduced because I was now on long term disability. One thing was moving. We were living in a place where the price was exorbitant because of the postal code. So we started house hunting and that’s when it really hit me. Each place we visited the estate agent would ask what I did. I felt almost pathetic (it’s not!) to say I was disabled so I would just say “content developer” because it was easier. I wouldn’t have to explain. I wouldn’t get the look and treatment of pity. I hate that.

So what would I say going further? At this point I was blogging at least once a week. Blogging is great because I love to write and blogging allows me to take my time so that I don’t strain myself. I can do it in stages.” My following has soared and I am so grateful for each and every reader because you make me feel what I do rewarding. I have other passions that I’m toying with and hoping something comes out of it. I really hate saying I’m disabled. The first thing people think is “Where? What disability? She looks perfectly fine to me.” Yes, not only am I “disabled” it’s invisible. So I have to go on to explain in detail and basically get people to believe that I am actually sick.

People often ask us to define invisible disability. In simple terms, an invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings,Β  false perceptions, and judgments.

Invisibledisabilities.org

I read a brilliant article about someone with the same battle and how she chose to deal with it. I have decided that I am someone with disabilities but I will not be defined as being “disabled“. I have disabilities, I am differently abled but I am still Tracey. Now more than ever am I in touch with the real Tracey and that feels good. It feels right. So for 2020 I am Tracey the blogger, the Lupus activist and warrior (Even though alot of the time I am sick, curled up in bed or in hospital). I am not completely incapable of physical or mental activities. I might not be able to do alot of them and get brain fog but I battle through it as best I can. Who knows, the occupational therapist might give me the go ahead to go back to work at some point.

SO…HI! I’m Tracey. I’m a blogger and I have disabilities. Really I’m just differently abled to you. I have my struggles but I am living my life the best way I know how! My disabilities are invisible but I can assure you they are real or I would not be on long term disability. If you read my blog you will get some insight into my journey with my invisible disabilities. Please see me for who I am and NOT the label society has given me(albeit necessary for many reasons). I hate labeling people anyway but if you meet me and walk away going “whoa that’s a crazy chick!” I’m totally okay with that. LMAO. Having said that I WILL be getting the disability card for our car because it is actually very necessary at time. Not being a hypocrite, it is my right.

Here are links to some articles about invisible disabilities, including the one I referenced. You might not need it but please share it with someone who battles with this. You never know, this might be just what they need right now.

https://www.rickhansen.com/news-stories/blog/lets-talk-about-invisible-disabilities

https://www.theguardian.com/commentisfree/2019/aug/09/disabilities-invisible-prove-stangers-disabled-services-illnesses

https://www.huffpost.com/entry/words-shape-disability-why-language-matters_b_58c58b8ae4b0c3276fb78658

19 thoughts on “Labelled Disabled. The Struggle.

  1. I absolutely love the way you write Tracey! You are so honest, wise, and unique. Hi. I am Jessica and I have 2 invisible disabilities. I hate that word… disabled. I am able, as well. Looks can be deceiving. I’m glad to know that you are starting to feel better. I care about you from afar. Best wishes, Jessica

    Liked by 1 person

      1. Hi Tracey. I have lupus and fibromyalgia myself. I’m new to your WordPress and enjoying your writings. They are true and raw which is inspirational.thanks.
        I live in the us on the west coast, Oregon. I belong to a fun support group that has live Face Book chats on Monday at 10 am our time. People from all around the world join in. They also have a web site and Instagram. I thought you might enjoy. Oh all past chats are on their site.
        Morethanlupus on fb
        Creator of the non profit is Kelli Roseta..

        Liked by 1 person

  2. Hi Tracey
    Thank your for sharing about your autoimmune disease, my oldest daughter has lupus, POTS, ehlers-danlos syndrome and more it is a struggle for her, she has a blog called chonicallyhopeful and her name is Victoria and she started a youtube channel as well talking with others about her diseases and sharing what she has learn from her journey. I am following you and share your information with her.

    Like

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