I need to vent, I don’t want to keep resorting to social media or people I care about. Then I realised that often when my emotions are strong I always channelled it into writing and therefore, am only doing what I am used to, writing. However, it hasn’t been constructive because I have been burdening others with my stresses and worries. (I would like to note, that if you are doing this. Do not feel guilty. You are not a burden. The reason this is unhelpful for me and isn’t healthy is because I am literally trauma dumping on them multiple times a day. This is also unhelpful for a number of reasons, I don’t fully process them because I’m too overwhelmed. Also, I don’t have anyone close to me who understands what I am going through. My friends are predominately healthy able-bodied people and they don’t have the experience to help, they are also not me so they can’t fully understand. )
The reality is they can only reassure me and sure that is useful but I shouldn’t be emotionally dumping on others. I understand that I have not been doing it on purpose, I have only been overwhelmed by my emotions and done the first coping mechanism I know of. (Again, if this is your coping mechanism and it is done in a healthy way. Do not let my experience stop you from having a healthy outlet. I think everyone needs one, but it is easier for an able bodied person to find one because they have better access.) However, for me, this isn’t healthy. In my attempt to be transparent in my experience as someone with a chronic illness I have developed an unhealthy coping mechanism. Which I am hoping to adapt and reconstruct. I think I was right in the beginning as doing it in the form of the blog. The blog allows me to save the document and wait, reread and consider the experience from
various points in time. Which, in hindsight is more useful to anyone reading my blog. I complain (internally) that I don’t have the energy to do it anymore. But the reality is I have diverted that energy elsewhere and I need to reconsider how I wish to share my experience. Because I have never thought that my experience wasn’t an important piece to share. I don’t think I’m important (my experience and myself are two separate entities, I am simply the one experiencing what is happening to me & that’s the extent of my importance in this part.) It may not be relevant to everyone and it may not be helpful to all. But if I can reassure a young person who is going through something like I am. That it doesn’t take away from who they are. It only reconstructs it. If it helps them to seek help and support early on, then that’s all I want. No matter the person, age or gender, I want my experience and trauma to help others.
The reality is, chronic illness is lonely. Whether you have a support group or not. Whether you have friends who even have the same condition or not. Why? Because they aren’t you. They can’t be in your body and share this experience with you. No matter how good a communicator you are. No one can tell you how you feel, except yourself. The most important thing to remember? You are valid. Your experience is valid. Your feelings are valid. You are NOT a burden.
I remember something someone said to me, which helped shred a lot of my internal ableism. (I apologise because this is something someone tweeted to me and I forgot their name.)
“If you are even considering a mobility aid. Then you need it.”
This changed my life. It empowered me to get my shower chair (which was the aid I was debating). It empowered me to get my first walking stick and seeing someone my age on the train platform with one also? Empowered me to be proud of it. To be proud that I have been able to work past everything I did internally to be able to use it. (I am not proud that the ablism was there in the first place.) Let me be clear: There is ablism in EVERYONE. This includes disabled people. Why? Because it is ingrained in our education system. It is engrained in our societal structure. Therefore it has been engrained into our brains and thought processes without you even realising it.
Something I found really damaging was when I ordered my stick. There was a picture of an old man on the front of it. I admittedly got it off Amazon and it was the only one I could afford. However, it didn’t have the box on the page when I bought it. To be excited for my new stick and to open it up to see a box of an old man on the front? Hit home. I nearly never used it. In fact, I think if I hadn’t needed to go to the office that week I may never have used it. But my fiancé reminded me it was just a box. He tried to justify it by saying “it’s their demographic”. But as he said that, he reminded me why I needed this stick. I’m not saying what he said was helpful, it still hurt and he apologised.
The reality was, it reminded me that this is who these companies think are buying their products. That it was the socially acceptable form of disability. That if you had worked so hard your body was collapsing, that was OK. It reminded me why I needed to be seen with the stick. It reminded me why it was so important to share my experience. The stick did wonders to my day. I found I could do more, I was less tired. I found that it made my life easier. Which was why I bought it. I will also always be grateful to the redhead who got on the platform/train. She helped me just by being there. She reminded me that she was beautiful AND had a stick. She reminded me that I wasn’t alone. She helped me by reminding me I was part of their demographic. That I wasn’t alone. That I was beautiful AND had a stick.
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