“There are countless people in this world living with "invisible" medical disorders. I just so happen to be one of the unlucky few with a couple of them. In this post I will explain what it is like living with an invisible illness and what you, as the friends and family, of those who might also be living with such a horrible condition can help. Too many people are being lost each and everyday to suicide. For a moment open up your heart and realize though we might not have an "accepted" disease such as cancer our conditions are real and the amount of pain we experience daily is unimaginable. We need your love and support, through our good days and our bad. Please don't judge us, we did not ask to be inflicted with this life. We would give anything to be healthy and living the life we watch others live. Please don't give up on us - we are trying each and everyday not to give up the fight we battle each day of our lives. I'm not just speaking on my behlaf, this is for every single person out there battling an illness. Stay strong my friends! ♥”—
Invisible Illnesses and Welfare
“She put all her kids on SSI and they’re not even sick! I have a kid with a behavioral disorder and her kids behave way better than mine!”
“She just lays around all day in her pajamas. She doesn’t even TRY to look for work!”
“He’s not disabled. He doesn’t even have a handicapped tag on his car!”
All things I have heard as evidence that someone is committing fraud. OK, now let’s look at some other things I’ve heard on the job:
“No, I don’t have any chronic conditions. I just need blood work every couple of months.”
“No, I don’t have any chronic conditions. I’m bipolar, but that doesn’t count.”
“No, I don’t have a disability or anything. I mean, I had cancer, but that’s in remission so it doesn’t count.”
This society has a warped view of what is and is not a valid disability, and mental health diagnoses in particular are very misunderstood. Again, nobody has the whole story if they’re on the outside looking in, so if you see someone “committing fraud” because they’re “lazy” and “not even trying”…please just stop that thought process in its tracks and give the benefit of the doubt. Living in an ableist society has made it so even people with valid chronic conditions, who could be receiving coverage through us, don’t see themselves as worthy of healthcare. If you accuse people with invisible illnesses of committing fraud, you are contributing to that problem. Stop it.
No, I don't want to know what you think about my disease.
So here’s the thing about invisible illnesses: you can’t see them, but trust me, they’re there. I have sickle cell anemia, a blood disorder that totally screws with my body’s functionality, causing my physical (and, consequentially, my mental) state to fluctuate on a day to day basis. In general, sickle cell lowers a body’s immune system, energy levels, and ability to put up with jerk-wads who have no idea what they’re talking about, but decide to keep yakking anyway. Here are some of the fun things I’ve been told over the years by able-bodied individuals:
- But you don’t look sick.
- I don’t understand how you were fine last night at the party, but are “sick” today.
- You’ll be fine! A little cold never hurt anybody!
- You’re so lazy. There aren’t that many stairs.
- Some people have it much worse.
Here is the one thing I wish I could say in return:
- YOU DON’T HAVE SICKLE CELL, SO YOU DON’T KNOW WHAT I’M GOING THROUGH AND, THUS, HAVE NO RIGHT TO SAY ANYTHING TO ME ABOUT IT.
If you really want some insight into what it feels like to live with an invisible illness, I suggest you take a look at http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ by Christine Miserandino. The theory is a great snapshot into the life of people living with certain health disorders, of which sickle cell is one. Pretty much everything over at butyoudon’tlooksick.com is pretty sweet (especially their merchandise, but I’m pretty salty they don’t have any Sickle Cell Sucks shirts. I mean come on. You’re missing a GREAT alliteration opportunity, guys! But I digress…). If you’re looking to become an advocate, or just to better educate yourself, this is the place to start.
What you really need to know though, is that sickle cell and other invisible illnesses are so tough to live with on a daily basis, and you acting like they aren’t that serious just because you don’t see them is degrading, hurtful, and overall annoooooyyyyyying. I obviously can’t speak for everyone, but I know that my disease takes away enough of my power and control for one lifetime and I do not need you taking more of it away with your dismissal and disbelief. I don’t want you to know exactly how it feels to be in pain all day every day of your life (because it sucks, and I would never wish it on anyone). I just want you to understand that I am.
So here’s what you can do for me, for your brother with lupus, for that girl in your class with arthritis, for that stranger who asks for your seat on the bus because they have fibromyalgia and cannot stand any longer: think before you speak. Now, clearly, I don’t mean “don’t ever say anything to me about sickle cell you raging buttwad!” Really, what I mean is that every time you are supportive of my struggles, a fairy gets her wings, and every time you try to tell me about how my disease works, a warm fuzzy dies (yes, the cute little googly-eyed things). The only exception to this rule is if you are a doctor, and even then, the adorable things get shanked if you try to tell me how I feel (should feel, could feel if I did this, would feel if I thought that…). The truth about it is that you’ve never had the disease! And, just in case there’s another sickler out there ready to troll me, GUESS WHAT! Even if you do have sickle cell, your experiences are different from my experiences, are different from T-Boz’s experiences (shout out to my childhood of dope 90’s R&B groups). That is not to say that I don’t want to chill and complain about invisible illnesses with you, though, cause I deeefinitely wanna do that. Hit me up, other sicklers. I know you’re out there.
Bottom line is, I’m not in a wheel-chair, I don’t use a cane, and I have all of my extremities, but that does not make me an able-bodied individual. So please don’t treat me like I am, and please don’t try to tell me how I should act or feel.
Let me know if you want me to do something like this again. I’m trying to get more into internet advocacy, and I figured I might as well start with something close to home.
Hey, I didn't know we were doing this again!
Invisible Illness Week - 30 Things
1. The illness I live with is:
Dysautonomia, which manifests as Postural Orthostatic Tachycardia Syndrome, as well as chronic headaches and insomnia. I also have hyper-flexible joints, mild scoliosis, and depression—these three may or may not be related to my Dysautonomia.
2. I was diagnosed with it in the year:
3. But I’ve had symptoms since:
I was born, or at least very young.
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
I’m lazy, and that I’m faking my illness to get advantages.
6. The hardest part about mornings are:
Swallowing all my huge pills, and mustering the energy to clean myself.
7. My favorite medical TV show is:
Don’t watch any.
8. A gadget I can’t live without is:
Can I say my pill box?
9. The hardest parts about nights are:
Not sleeping, finding a position that doesn’t hurt my back or knees.
10. Each day I take:
Oh boy, here we go: Butcher’s Broom, Feverfew, Gingko Biloba, Vitamin D, Fludrocortisone, Atenolol, Melatonin, Valerian, and one more that I don’t like to discuss.
11. Regarding alternative treatments:
My main medication is actually a botanical that my cardiologist recommended to me—Butcher’s Broom—as a replacement for the Midodrine I wasn’t reacting well to. I’m also trying to get to physical therapy again.
12. If I had to choose between an invisible illness or visible I would choose:
It’s hard to say! When I use a wheelchair, people immediately stop talking to me and talk to the person pushing the chair, because they assume I’m mentally disabled, I suppose? But at least they acknowledge that I’m disabled.
13. Regarding work and career:
I’m just starting to look at colleges. Ultimately, I’d like to be a college professor (of Linguistics, perhaps) because the hours are pretty flexible.
14. People would be surprised to know:
How much work it takes just to make it to school.
15. The hardest thing to accept about my new reality has been:
That I can’t do things at the last minute like I usually do, because I can’t know that I’ll be functional at the last minute.
16. Something I never thought I could do with my illness that I did was:
Go back to school after a year in independent study and make friends!
17. The commercials about my illness:
18. Some things I really miss doing since I was diagnosed are:
Long, hot showers (if I have a hot shower it has to be short). Uh, being able to take care of my hair, theatre, being able to concentrate, sitting still for a while without pain, etc.
19: But it was hardest to give up:
My straight As. (Well, except for PE, but those were early POTS symptoms, so I don’t count those grades.)
20: A new hobby I have taken up since my diagnosis is:
I’ve started knitting again. And Homestuck. That’s definitely a hobby.
21: If I could have one day of feeling normal again I would:
Take some dance classes, eat spicy food, stay up late, etc.
22. My illness has taught me:
To take care of myself, and place myself first.
23. Want to know a secret?
My medical problems have given me a lot of mental issues.
24. But I love it when people:
Accomodate me, but still include me in their activities.
25. My favorite motto, scripture, quote that gets me through tough times is:
I don’t really have one.
26. When someone is diagnosed I’d like to tell them:
Look up the Wikipedia article on POTS, because it’s really good. Don’t be afraid to shop around for a doctor who gets it. Be kind to yourself.
27. Something that has surprised me about living with an illness is:
How little some people care.
28. The nicest thing someone did for me when I wasn’t feeling well was:
I can’t think of anything.
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this makes me feel:
Kinda awed that you waded through all that.
The Facets Magazine profiles Danielle Cosgrove
I had the privilege this past month to write about Danielle Cosgrove for The Facets Magazine. It’s an incredible honor to participate in the clever, born-in-Chicago celebration of diversity that Facets embodies, but most of all, I was so glad to be part of Danielle’s journey for even just a brief period of time. Her words and her positive attitude could not have been more timely, as I am still struggling with the loss of a dear friend to a very different, but equally misunderstood, invisible illness. Learn more about Danielle’s story and invisible illnesses by reading Facets’ June/July issue here, and help us raise awareness of CRPS/RSD!
Have you tried cutting out dairy?
It’s because you’re not sleeping facing west.
You haven’t tried pumpkin seeds soaked in an alpaca urine?!
At times like this, I wish I could draw comics. People seem to be able to rant concisely and eloquently through comics. Anyhow, this morning on the facebox there was a post by an friend celebrating that, after half a year, she’d finally had a good night’s sleep with the help of a sleep aid. Woo! I struggle with sleep myself, so I was happy to share her victory.
BUT wait — the first comment advised her to go easy on the sleeping pill that she had used. Okay — presumptive, but sharing a personal anecdote about the drug. Not so bad. But the second comment said:
try Chamomile or Varerian? No grogginess next day:)
When it comes to chronic and invisible illnesses, there’s always some Helpful Harry — well-meaning, but smug — who is certain she or he has the cure for that thing you’ve suffered for a decade. And, when they tell you about the alpaca-urine pumpkin seeds, they all do a face like this:
I guarantee that every person who’s suffered months or years of chronic insomnia — the kind bad enough that you’ve gone to a doctor for help — has long since thought of, tried, abandoned, and probably grown to hate the rancid, simpering smell of chamomile tea.
Those who give unsolicited advice suggesting chamomile over Tramadol for its nifty non-hangover effect probably smell like chamomile tea.
I might seem a little oversensitive about this tiny facebook post. I’ve struggled with sleep, fatigue, and all-over pain for about 10 years. I have had diagnoses and prescriptions coming out my ears. At the behest of well-meaning friends and relatives, my family has spent thousands of dollars on natural therapies, diets, products, and super-duper chamomile magic beans. None of which worked.
What’s the solution? If you have a friend or relative with an invisible (or, hey, visible!) illness or condition, ask them if they’d like to talk about it. Ask them if they’d like suggestions. And if they say, “No, thank you,” don’t press the topic.
Rest assured: we’re grateful for your concern and your interest, and glad that something (even chamomile!) worked wonders for you or your friend. But not everything works for everyone. Yes, we want to be better — we’ll continue making practical changes where we can, and we’ll ask for help in the ways that best support us.
Also I really, really hate chamomile tea.
I think that’s everything. Thanks for reading.
Today I started my three-day Lightning Process training course.
And I feel pretty good mang! :D
I haven’t napped since I got home. I’ve been awake since 7AM and… it’s 7:30PM now. I haven’t slept. I haven’t allowed myself to START even drifting off. I just run off to my room when I need a boost and do the LP. :D
I kind of feel like I want to pass it on to other people… but the course is quite expensive and I wouldn’t want to charge people for it. :x I’m fairly certain only those chosen by the designer of the course/technique can choose who may be a practioner anyway, and I couldn’t pass this on with my limited sort of need-know knowledge. But what am I talking about I have other things I want to do with my life.
I feel so much more… positive after the course. Positive and energetic. Not that I am dûing (this is a deliberate misspelling as part of the course. It’s very difficult to pick up for a fan of words like myself, haha.) energy yet. I am on my way to dûing energy for sure though. I will stop dûing CFS soon!
I have an inner ear disorder that causes vertigo when I stand up. It doesn’t last very long, a few seconds to a few minutes, but it’s bad enough that if I’m not holding something secure, I WILL fall. So, I need the toilet stall with handlebars. The other day, I was in an empty public bathroom. When I finished, there was a woman in a wheelchair waiting with a male security guard who escorted me out. I was so humiliated. Was I wrong to use the stall? How can I handle this better next time?
(We recently received this post as an anonymous ask, but I’m opening it up for suggestions from our followers. If you’ve got any advice please reblog and let us know.)
I’m really sorry that happened. For what it’s worth I don’t think you were wrong to use that stall - you have a legitimate need for those handle bars. Unfortunately a lot of people (fellow disabled people included) will assume we aren’t disabled if our condition isn’t visible, and it sounds like that’s what happened to you.
I’m not sure how best to handle it in future. There are a few strategies but they’re not without their problems. We shouldn’t have to disclose our specific disabilities (and it’s often very difficult to do so anyway, if we can’t be sure whether or not we’ll be believed). I don’t know whether you’d be comfortable ever saying “I do need to use this stall; I need the handlebars” - I’d quite understand if you weren’t, as the onus shouldn’t be on you to have to do that in any case.
I know quite a few people with invisible disabilities will often use canes as a marker of disability (and also because they’re very useful!) Before my condition deteriorated I used a folding cane when walking & on public transport and that did help me feel less anxious about using disabled seating. Perhaps something like that would help you, if you are able to acquire one? It might also help prevent falls.
In any case you certainly didn’t do anything wrong using the stall. I wish I had more concrete help to offer here but unfortunately this is something a lot of people with invisible disabilities experience and it can really suck. You definitely aren’t alone, though.