I didn’t make this, but kudos to whoever did.
I didn’t make this, but kudos to whoever did.
#respect #different #abilities #visible #disability
Here are 5 things to avoid saying to someone with FMS, ME/CFS, or other “invisible” illnesses:
- “You look great—you must be feeling better.”Looks can be deceiving. It’s possible, even likely, that we’re just getting better about concealing how we feel, not actually feeling better. Or it might be a single good day after a month of horrible days. Either way, this comment—which may have been intended as a compliment—makes a lot of people feel misunderstood. It’s a judgment made without an effort to truly learn how we’re doing.
- “Let’s get you out of the house. It’ll give you a boost!” Believe me, most chronically ill people would love to get out of the house more. If we’re staying home all the time, it’s likely that we’re not feeling well enough to get out. Being pressured to do something we’re not physically up to causes added stress, which makes us worse.
- “Are you sure you’re not just depressed?” It’s true that many of us are depressed, and even if we’re not, the symptoms can be similar. However, depression alone can’t explain the broad range of symptoms we experience, which is often several dozen. This comment discounts the validity of our physiological ailments. (Plus, depression is a very real and serious illness, so the phrase “just depressed” is never appropriate.)
- “I know how you feel; I get tired, too. “ If you’re so tired that you feel on the verge of complete physical, mental and emotional collapse, you might know how we feel. Otherwise, statements like that make it seem like you’re trivializing an illness that’s much more than being tired. If you want to appear understanding, you’re better off saying something like, “I’ve been really exhausted lately. I don’t know how you live like that all the time.”
- “If you’d (exercise more/lose weight/eat a better diet/get back to work) you’d feel better.” While exercise or dietary change do help some people with these conditions, the wrong changes can make us much worse. We know our bodies best, and we need to research those changes for ourselves. Losing weight is extremely difficult for someone who can’t be very active, and being told to do so is hard on the self-esteem. Plus, there’s no evidence that losing weight would help much anyway. When it comes to “getting back to work,” again, that’s something most of us would love to do but can’t.
So What SHOULD You Say?
Now that you have an idea what topics to avoid, here’s a look at some things that would be especially welcome by people with these conditions.
- “If you’re not up to going out, we can just get together and (talk/play cards/watch a movie).” This shows that you understand the limitations of the illness and gives the person an alternative to canceling plans that may better accommodate their symptoms.
- “Let’s do our grocery (or Christmas) shopping together. I’ll pick you up.” Shopping can be extremely tiring for us, and it can really help to have someone else there to help with things like loading and unloading the car, or trekking back across the store for a forgotten item on the other side. A really good friend will read Holiday Shopping With FMS & ME/CFS and give helpful suggestions while out and about.
- “How much are you up for today?” This shows that you understand energy levels can vary from day to day and can help your companion feel comfortable expressing his/her limitations.
- “How are things going?” This is better than asking “how do you feel?” It opens the door to all aspects of life, instead of just physical well-being. Most days, I don’t feel that great, but other aspects of my life might be going really well.
- “Can I (give you a ride/help with that/etc.)?” This works better than something like, “Do you need me to….” because it shows a willingness to help without implying the person is incapable or is a burden.
Inspired by the comments by weresehlat on my depression post about their same problems with talking to people about lyme disease (more info here and here) , this is for everyone who has an illness which isn’t obvious.Fuck anyone who says “Oh but you don’t look ill”.
Lyme disease is a much bigger problem than reported cases indicate, necessitating a statewide public education blitz to prevent transmission, along with more awareness in the medical community and mandatory insurance coverage, according to members of a special commission charged with investigating incidences of the tick-borne disease”
“Doctors also need education on the three stages of Lyme disease, along with current treatment options, commission members said.
In addition to calling for mandatory insurance coverage, the report recommends spreading the word in the medical community that guidelines Lyme treatment are based on limited data, that recommendations regarding antibiotic treatment of patients with persisting or relapsing symptoms are based primarily on the results of one clinical trial, and reminding physicians of a law that protects doctors from facing disciplinary action should they choose to diagnose and treat according to clinical criteria.
When it isn’t recognized right away the disease becomes more serious. Improved laboratory diagnostic methods are also necessary, according to the commission’s findings.”
For Rare Disease Day please “raise your hand” to support everyone affected by a rare disease, even caregivers by just clicking this link. For every click, Lundbeck will make a $1.00 donation to support rare disease research through the National Organization for Rare Disorders (NORD). Lets make a difference!
Lymedisease.org/what used to be CALDA is looking for people in the US with lyme disease to fill out a survey about how they’re treating it. There’s not much being done in lyme reasearch so things like this ARE being used in major papers for statistical purposes. If you have a minute, fill it out. If you have more minutes after that, pass it on.
Yes, there’s the pain, immune problems, fatigue, sleep, throwing up, etc. but here is a list of things people probably overlook that we have to deal with.
- If we gain weight, it’s not easy to take it off. We can’t just work out tons like you can, and we can’t necessarily pick what…
It’s hard not to be angry when you have a chronic illness.
You get mad at people for not understanding, you get mad when you run out of spoons, you get mad when you have to cancel plans at the last second, you get mad at the pain, you get mad at people you care about for…
THIS. I had a friend who I kind of lost touch with message me recently saying “Your posts about being sick seem so angry, I’m worried. Maybe you should see about looking into a support group or something?” And that made me fucking angry. I have people I can talk to about being sick. I talk about being sick with people a lot. I’m tired and frustrated of living with being sick. Nothings going to change that. It made me angry because sorry I’m not being sick how you want me to. Sorry sick people are fucking frustrated and yes, downright fucking angry. It’s fucking awful to have all these plans and expectations for what your life is going to be like and then have the answer to the question of, “What do you want to be when you grow up?” answered for you as “A fucking invalid”. Able bodied, healthy people don’t get to tell disabled or chronically ill people we’re not expressing ourselves properly or feeling the “right” way about our situations. If we want to be angry, we have every fucking right to be angry. We’ve fucking earned it.
“You have a chronic illness?”
“You’ll never get better?”
“nope, I’ll always be ill”
“even if you rest?”
“You’ll really never get better? Not even in 40 years?”
“oh that sucks, I hope you get better soon!”
“I thought the medication was supposed to make everything better.”
“I have an incurable disease!”
“So, the medicine doesn’t make you better?”
This is life with Crohn’s Disease :/
“You’re STILL taking medication!?”
“You’ve been doing this a long time, I think you should see a different dr.”
“I’ve seen several different drs. This is what I have to do.”
“All that medication can’t be healthy for you. Have you ever tried NOT taking it? I bet you’ll feel better.”
“Um….I take the medicine because I feel sick. I didn’t take the medicine first and then get sick? Also, yes I have tried not taking it and I get worse without it.”
“I don’t know, I just know my brother’s friend’s sister’s girlfriend’s aunt’s neighbor’s mailman who had the same thing and they didn’t have to do all of this.”
Lyme disease! I know you’re sick and this is your life and all but are you SURE you know what you’re doing based on your own lived experiences?