As you guys know, I'm a chronic illness warrior and part of the reason I started this blog was to create a place that I could help educate others and end the stigma against mental and physical illnesses. With that, I have stumbled upon some awesome movements that are also focused on those goals. Because I support them so deeply, I have written about my two favorite ones: #WhatYouDontSee and #BesidesMyDiagnosis.
Well, today I've got another one. One of my favorite chronic illness bloggers has started her own movement and it's called #VisibleWeStand. If you're interested in reading all about it, you can check out the blog post, "#VisibleWeStand: An Introduction" on A Spoonie's Tale.
Without going too into depth, the #VisibleWeStand movement was brought about to:
- Promote awareness of chronic & invisible illnesses
- Shed light on the unique challenges we face as chronic illness warriors
- Add to the already amazing & extensive community of support created by spoonies for spoonies.
- Promote confidence & pride in spite of illness.
Of course, I support all of these things! So, I wanted to jump on this movement as soon as I heard about it! Lucky for me, all I have to do is answer 10 simple questions for all of you :)
1. How would you introduce yourself?
Honestly, it depends who I'm talking to. If I'm introducing myself in a business environment, then I label myself a blogger, writer, artist, and graphic designer. I really only introduce myself as a spoonies if someone asks what I blog about or it comes up in conversation. Of course, I'm very open about it on my blog and my social media accounts.
2. What diagnoses have you received?
Where do I even begin?! Here's a list of everything that I can recall off of the top of my head, but I'm probably forgetting a few.
- Early Childhood ~ PTSD - 2016 ~ Sleep Apnea
- 2010 ~ Astigmatism - 2016 ~ Fibromyalgia
- 2012 ~ Hypothyroidism - 2016 ~ CREST
- 2013 ~ Hashimoto's Thyroiditis - 2016 ~ Pulmonary Hypertension
- 2013 ~ Anxiety - 2016 ~ Chronic Sinusitis
- 2013 ~ Depression - 2016 ~ Chronic Tonsilitis
- 2016 ~ Lupus - 2016 ~ Lung Nodules
3. What would you like others to know about your illnesses? What kind of symptoms do you face?
In all honesty, I just want others to know that whether or not they can see my illnesses, I am still sick. Most of my illnesses are considered "invisible illnesses" because my symptoms can't be seen from the outside. Although personally, I think that they could be, if anyone looked hard enough, no matter how hard I try to hide them. Apparently I do a pretty good job though, because people rarely believe that I am sick. I've had nurses look at my medical chart and say "bless your heart. If I saw you on the street I would have no idea that you were this sick." Little do people know that I rest myself for days before and after any outings. I know that I have to save enough energy to successfully make it out of the house and I also know that it will take everything out of me too. My symptoms vary from migraines, body aches, upset stomach, varying temperatures, brain fog, dizziness, weakness, buckling legs, and more. Living with a chronic illness is an ongoing battle.
4. What kind of challenges or obstacles have you faced since becoming ill? How were you able to overcome them?
I think my biggest challenge was realizing that I'm not going to be able to do everything that I was once able to do. I was devastated when I had to quit school and my job. It only got worse when I realized that I couldn't even manage a normal social life or activities at home. I had to stop baking (which I loved), hanging out with my friends, and more.
I can't truthfully say that I have overcome these obstacles, however, I can say that I've made some positive effort to. I've looked in to various online programs to continue my degree, which I will hopefully be able to do once my symptoms get under control. I've also started working from home. Besides my blog, I've also got a few services up on Fiverr and a shop on Storenvy. My life at home is still difficult, but I'm managing. My husband has been awesome at doing the cooking and cleaning and it's helped a ton. As far as my social life goes, I've learned to make friends online. I still try to meet up with the wives every once in a while, but it's difficult with my symptoms and all of their children. Of course, I'm still trying to make it all work. Many of my diagnoses arrived this year, so I'm still getting used to everything.
5. If you could ask the spoonie community for advice on one thing, what would it be?
How do you do it?
There are so many changes that come with a chronic diagnosis. Then there's the physical symptoms which can be excruitating. On top of that, there's the stigma that comes from society and sometimes even family. There's the judgments that come from others that can't quite understand what you're going through. There's just so much that chronic illness warriors have to go through and adjust for. So my question to them is, how do you do it?
6. If you could send a message to the healthy community, what would you say?
I would just ask that they rethink their feelings towards the chronic illness community and question what they've been taught about people with disabilities or chronic illnesses. There are so many people out there that think we are less because we aren't healthy, but it's not true. Then there are the people that think that all illnesses should be visible and all people in wheelchairs cannot walk. Every single person and every single illness is different. Society needs to stop generalizing and stereotyping every group out there.
For the healthy community that have dealt with the spoonie community first hand and understand what we want from you, I want to say thank you. I know that in a lot of chronic illness related posts it might sound like we assume that every healthy and able person treats us poorly, but that is not the case. It's just that we have dealt with some very judgmental people and it can make what we're going through much harder.
7. What inspired you to participate in the #VisibleWeStand movement?
Tracy and I are part of the same blogger network and I've realized that we have a lot of the same values and goals. So, when I found out that she created her own movement, I wanted to support her with it. The best part is, I love every part about it! I believe in everything that this movement stands for and I want others to know about it too.
8. If you could go back in time and give yourself advice when you first got sick, what would it be?
Enjoy the present!
Before I got sick, all I could focus on was the future. I worked three jobs to make sure that I could go away to college and I was in various after school activities. I did everything that I possibly could to guarantee my future. Because of that, I missed out on hanging out with my friends and most of all, living in the moment. I was too busy working, volunteering, and building my resume that I didn't get to enjoy the things that most people do as a teen. So, I wish that I could go back and do those things.
9. What, in your opinion, can we do to further promote chronic and invisible illness awareness?
Before reading this question, I was scrolling through my Facebook feed and saw an ALS ice bucket challenge video. It turns out that the challenge actually helped ALS research from the donations and they found something that could help identify it in future patients. So I'm not sure if this is something, but maybe in addition to movements and word of mouth, we can create some type of video challenge or campaign to help spread the word.
10. What advice would you give to someone who is afraid to disclose their illness because of the stigmas that spoonies often face?
I would say that it's not only important to be honest with yourself, but be honest with others as well. At the very least, be honest with your friends and loved ones. I don't necessarily think that every person you meet needs to hear your life story, but I do think that sharing it will help you and our community. The best way that we can promote awareness is by word of mouth, so share whatever you're comfortable with. However, don't let other peoples ignorance ruin you being who you really are.
Being diagnosed with a chronic illness can be life changing and unfortunately, things aren't always easy. People like to judge others for things that they couldn't possibly understand and feel the need to tell them how they should be living their life. That is why I am so adamant about supporting movements like #VisibleWeStand, #BesidesMyDiagnosis, and #WhatYouDontSee. It's important that we take the time to educate others so that they can understand us just a little bit more. Dealing with a chronic illness is difficult and we need as much support as we can get!
If you have been diagnosed with either a mental or physical illness, I recommend that you take part in this movement. I would love to get to know you a little better, so feel free to drop your links in the comments!
Please take a moment to share this post on social media and help us spread the word about spoonies all over the world!
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- 6:00:00 PM
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