Chronic Illness #VisibleWeStand
6:00:00 PM
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!
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4 comments
It's so sad when people try to tell us what we should be doing and the worst is when they tell me it's all in my head. They don't know how hard it is for me to just go grocery shopping or take a walk around the mobile home park I live in. I have to use a cane because like you, my legs give out on me without any kind of notice.
ReplyDeleteI'm sorry that you have so many problems (í.e. having both Fibromyalgia and Lupus). I was Rx with Fibromyalgia in 1993 but at first that thought I had Lupus. I feel your pain. I wear a TENS unit on my back from the time I get dressed until the time I go to bed and have been wearing one since 1986. Many people ask if it's av insulin pump and are surprised when I tell them what it is. I could not function without it. My sister had one put in her back surgically and keeps telling me that my pain can't be as bad as hers because she's had 3 back surgeries and I've had none. My doctor told me the internal stimulator would not work for me.
I take Lyrica for my FMS and one time asked the rheumatologist why he was giving it to me because I didn't feel it helping me and he told me it's what's keeping me walking. I found that to be true the hard way. I ran out of my Lyrica middle of last month and since I'm on extended vacation thanks to a good friend, I had to rely on my "roommate" to send my meds to me. I was walking down the steps and my legs gave out on me and I hit my left hip pretty bad on the railing. I couldn't walk for a few days and finally told myself that I have to get out of bed and use my cane in the house if I have to (which I did do) and my roommate finally got my meds to me a month after I had called them in. Now I'm out of my Vesicare and he finally got that along with my Xanax in the mail to me Friday. Even though he sent it priority mail, that doesn't mean I'll get it in 3 days as sometimes it can take a day or 2 longer to get here to Hawaii.
I bookmarked your blog site and will be checking to see how you are doing occasionally. If you want to friend me on Facebook, my name on there is Barbara Pike Varga.
Yes! I feel the same way! For the longest time, I went undiagnosed. I was actually told in 2012, that had I not come in for my yearly physical, I might have become fatally ill in a couple of weeks. My numbers were so off the charts that my doctor couldn't believe how I was standing. Little did I know, that that wasn't going to be my only life-changing diagnosis.
DeleteI appreciate your kind words. Like you, we were unsure of what it was at first. We were between MS and Lupus originally. I haven't heard of a TENS unit before, but if it's working for you that's all that matters! It's unfortunate that your sister would say something like that. It's imperative that everyone understands that each individual is different and so is each disease. I can't think of any two people that have the same symptoms while struggling with the same diseases. Just keep doing whatever works for you and the rest will fall into place!
I love your point about wanting people to understand that even when they cannot see your illness, it's still there.
ReplyDeleteI come from a long line of "invisible illneses". I've seen my grandmother, my mom, and myself struggle with things (anxiety, depression, fibromyalgia, a birth defect in the spinal cord) that no one can see. It can be frustrating, but there is hope and grace, and the people that love us and care about us will support us :)
Thank you Kristen!
DeleteI think that the only thing harder than dealing with a chronic illness is watching someone else struggle with one and being unable to help. Having a support system and faith is definitely helpful though!