You may have noticed that we did something a little different during last week’s #HAChat. #HAChat and #HARoundtable have combined forces to bring you a new and improved #HAChat 2.0. We brought a group of fabulous ladies from the Invisible Illness community together for a live discussion while also hosting our weekly twitter chat. The result was incredible. Not only did we hear from some wonderful voices of the invisible illness community, we saw lots of new twitter handles in the chat as well! In honor of Invisible Illness Awareness Week, here are some highlights from last week’s discussion.
But first, our
What does “invisible illness” mean to you?
ThrivewithLupus: Illnesses that may not always show externally, but can wreak major havoc on the body. #hachat
Rachel: I struggled for a long time wondering if my illness counted and I found that when I started by my blog, I would get a lot of private messages, saying – I didn’t want to comment because I was worried that my illness didn’t really count. I’ve found that pretty much any illness or anything that makes you different or makes your life that is a medical condition whether it’s physical or mental, it all counts. The first step that we need to take with health activism is getting people to stand up and say that my illness counts.
Christine: I constantly hear how great I sound, or “oh you still have that?” or “aren’t you better yet?” and I think all of us can kind of identify with some of those catch phrases. But the one thing I remember and the reason that I started blogging so aggressively because, I volunteer for the Lupus Alliance here on Long Island and a girl was going to prom and she said that she wished that she had a broken leg because then at least people would understand why she couldn’t at least walk or dance at prom. And I realized how important it was to kind of get invisible illness out there because if this girl was crying to me that she would rather have a broken leg than go to prom, then there’s a problem here. And what made it even sadder is I’ve been diagnosed since I was 15 I’m 35 now and some days I wish I had a broken leg… That’s what invisible illness means to me, it’s that desire to almost want it to be visible because then all of the sudden you’ll be understood. It’s that desire to think that if it was visible then someone would take it more seriously.
klgold: OMG this prom story on @wegohealth #HAChat hits home. It was like my sr prom story not being able to explain why I couldn’t dance #iiwk12
JaneWaterman: A dear friend of mine has #lupus but is also an amputee – the visible illness doesn’t gain her any more support: it’s quite shocking #hachat
Lauren: I’ve had IBD for seven years and when I was first diagnosed I was very quiet about it and I didn’t like to talk about it… I found myself downplaying the disease a lot. And I think a lot of us tend to do that no matter what the disease is because you want to stay positive. It’s as much for the people in your lives as for yourself. In the last year I’ve been much more honest. The more honest I am with people in my life, the more they understand.
Summer: In terms of how I define “invisible illness” – anybody who has ever been looked at and judged and then accused of malingering or faking sick.
What makes invisible illnesses unique?
Rachel: One of the biggest things is that invisible illness is so rampant. I read a statistic that 1 in 2 people have an invisible illness, but no one talks about it and it can’t be seen so no one knows about it. There’s been a really strong movement for people with “disabilities” which means visible illness, but invisible illness doesn’t seem to be as epic of a struggle because no one want to hear about it.
Serenebutterfly: Invisible illnesses are unique as you never know who else is suffering out there so getting support is that more difficult #HAchat
Christine: A few years ago right after I had my daughter I actually had to go through chemotherapy for my lupus and I lost all my hair. I had many a family member or friend say to me, “oh now you’re sick”. The irony was that the chemo was actually putting my lupus in remission so I felt the best I had in a long time, but now that I had lost my hair, now I was really sick. I do think we have these preconceived notions of what sickness looks like or what makes it valid. If you’re in the hospital, you’re sick. But when I was getting IV chemo from a home nurse I had friends that said, “at least you’re not in the hospital”. It’s the same poison going through my veins!
kimmiecollas: even those with more visible disabilities discount our issues- even within the disability community, we tend to be marginalized #HAchat
Lauren: I wanted to put a little positive spin on things. I think in some ways it’s a gift that you can’t see my illness because I get to choose who I want to share it with and how much information I want to share. Like when I was in college and I was just diagnosed and didn’t want to talk about it all the time, I could choose not to talk about it. Now that I want to be more vocal, I can make that choice.
LAlupuslady: Aside from the “invisible illness” the revealing question… do i share? when do i share? (dating, on the job or friends) #hachat
Christine: One of the things we touched upon is that many invisible illnesses come with friends. I always joke that lupus never comes to the party alone, and it’s very hard to distinguish between illnesses that you cannot see. Is that my lupus or my fibro? I think sometimes we have to become our own body detectives of figuring out what is going on with our bodies at any given moment. Since it’s invisible, there’s no concrete answer why we’re having a specific symptom at a specific time. I think that is unique to having an invisible illness. Many times we have more than one. We’re usually on more than one medication, which bring more than one side effect. Between all of those variables, it’s figuring out where something is coming from and how to deal with it or fix it or treat it.
Rachel: A lot of times when I’m explaining my illness to somebody new, I explain that on a daily basis I have to pick what kind of sick I’m going to be. Do I want to hurt today? Do I want to throw up today? And the idea that you have a certain number of spoons per day can be detrimental to people believing that I’m sick. People don’t believe that you can do these amazing things and then you’re out the rest of the day.
Summer: On a good day, I’m fine. I can go out and do things with friends. I can leave my safe zone. I can shop in the grocery store. Then for reasons that I still don’t quite understand, I can have such a huge problem with those very same tasks. I don’t really know the reason behind that. I think I’m beginning to understand what a lot of my triggers are, but others are always questioning. Why could you do this on Monday but you can’t on Tuesday?
Lauren: The hardest thing for me to adjust to is that I am super type A, planner, like to know about things ahead of time. I am not a “fly by the seat of your pants” type of person and I sort of had to learn to be one. You have to learn to adjust your expectations and adapt.
klgold: Challenging to plan ahead in that I don’t know what each day is going to bring. How will I feel tomorrow? #HAchat#Lupus
Christine: You also have to manage the guilt that comes with that. Just because it’s a good day doesn’t mean we need to fill it with all of the things we missed on the bad day.
How can we work together to promote awareness across invisible illnesses?
Summer: I’m finding a lot of folks my age (upper 20s) are more willing to come out and talk about specifically illness issues. There’s still a stigma associated with all sort of disorders, but the more you talk about these things, the less of a thing they become.
Christine: BYDLS really started with Lupus and I kept hearing people say o oh I can relate that to my MS, cancer, bipolar. At first I didn’t know how I felt about it. It was weird – the whole world was taking on something that was so closely woven into my life and was so personal. Now there were spoonies. If I can help one person help one person in their lives understand what they’re going through, then I feel incredibly blessed for the day.
Lauren: One of the best ways we can promote awareness across illness is to just be patient and empathetic with people.
Christine: A real easy way to help each other is to like each other’s posts, forward each other’s tweets and posts. Even if it’s not about your illness. Because it’s going to go back around. If I see a great post but it’s not necessarily about my illness, I feel like someone in my life might appreciate it, or that person posting it might appreciate it getting around. If we help each other through whatever social media means we have, we can be a wave of support for each other. So often we look to the outside for support but within our own little community of invisible illness online awesome people, we can support each other so much more than we give each other credit for. We can be each other’s biggest supporters.
Rachel: I almost didn’t say this because I think it’s a really silly little idea. Something that I’m doing is I’m actually handing out at school some little ribbons that are see-through, sheer, for all invisible illnesses.. Just an easy little thing to do to start conversations.
What is your “visible hope”?
Christine: My daughter. Because those times where we don’t want to take care of ourselves or we don’t want to go to the doctor or do the things that we need to do. She’s my reminder that I have to and I want to so that I can be the best mom that I can be. And actually, I have spoons all over my walls in my little office that people have sent me. All different types of spoons, wooden, metal, etc. I always say that that’s my visible hope because if people put their hope in me then I need to put hope in myself.
Lauren: I mentioned before that I worked for CCFA and I run our charity running/walking team. Every weekend I get to go to training and see our team of 60-70 people who are running walking and raising awareness some of them are patients or family members. A lot of them are people who wanted to do something nice for someone else and had never heard of Crohn’s or Colitis before. I cry at almost every practice every weekend because it’s so meaningful and empowering to see so many people banning together for a cause that maybe their friends and family didn’t know about before they started training with us. Every weekend I get that visual reminder and it’s awesome.
Summer: Part of the problem with panic disorder is agoraphobia, but before I developed panic disorder I loved nature and traveling. l and what I think I’ll start doing now is taking a photo of the location whenever I end up somewhere that I normally wouldn’t be able to access. Whether it be camping or at the top of a hill or collecting a series of photos that demonstrate to me later on that I can do this. Even after struggling with panic disorder for so long, it will really give me hope that I can do it again.
Rachel: Before I was diagnoses, I really identified myself as a dancer. I was in the color guard of my high school and never stopped dancing after that. My dreams of dancing professionally were derailed with my diagnosis. My visible hope would be my old color guard flags. I’ve kept all of my old equipment, and even though there’s no way I can participate in competitions or teams anymore, I make a point of once a week to go outside and throw stuff around and spin stuff and dance a little. It’s comforting to see them every day, and to know that I didn’t give up, If I push myself I can still do it a little. Exercise can really help chronic pain. At first it’s really awful and hurts more. But you can really treat chronic pain through exercise and dance.
Serenebutterfly:T4: My visible hope is receiving lovely comments on my blog or someone checking in on me via Twitter or Facebook – feel valued 🙂 #HAchat
SaraSpark2: T4: Visible hope is growth of support and understanding for kids who must eat differently + better diagnosis and treatment of #lyme #hachat
Join us every Tuesday at 3 PM ET for the #HAChat! From now on, WEGO Health will be hosting a Health Activist Roundtable during the #HAChat on Tuesdays at 3 PM ET. Well, except for the first Tuesday of every month where we will just have a chat to talk about the month’s theme, but every other Tuesday you will have the opportunity to listen in to the Roundtable and participate in the live twitter chat. There are about 20 spots available in the online meeting room, so be sure to get there early if you want to listen!