Dear Healthy People,
There are a lot of articles out there about what you should stop saying to sick people. Here are some things healthy people need to think about before they say because they are hurtful. Please stop saying and doing the following. You are being insensitive and ignorant.
I try so hard to be empathetic and tactful, but I am so sick of these people not even attempting to be tactful or empathetic to me in any way so, this time, the gloves are coming off. I’m sick of your crap and am calling you out.
1. Sorry But I ___________________
Using pain, illness, or lack of sleep as an excuse for bad behavior is incredibly irritating.
I recently had someone go off on me in anger and blamed it on not sleeping well… for two nights. At the time, I had slept an average of 1 hour a night for the last 30 days. It was insulting for someone to treat me poorly and use not sleeping well for two nights as an excuse for their behavior when even after a month without sleep I was still nice to her.
When you have a chronic illness you don’t get to use pain, illness, or lack of sleep as an excuse to be rude to people. If you did you would lose every person in your life within a week. I realize that being sick or sleep deprived for many people is an uncommon and terrible thing to deal with. But it feels so terrible that healthy people get to use it as an excuse when I strive to be a good, nice person despite dealing with dislocated joints, not sleeping for weeks at a time, and all the crap that comes along with having a chronic illness.
2. I Know How You Feel
When healthy people say this to me I seriously want to scream. First of all, being sick for a long time is nothing like having an injury, being acutely sick, or not sleeping well a few nights. Pretending it is the same minimizes the biggest struggle of my life, a struggle that is hard to clear my mind of for a single minute because my pain is there to remind me constantly. Unless you have had to grieve for the loss of your old life when you were healthy you should not say this to someone with a chronic illness.
Secondly, comparing someone’s illness to your situation is messed up. Why do you have to make the comparisons? Why can’t you empathize instead of minimizing my problems? Plus, let’s be honest. If you want to play the comparison game you will lose. You haven’t slept well for a few days? Try months. Your shoulder is sore? Try dislocating multiple joints a week. You have had an ear infection for a week? Try having a sinus infection for 6 months or a debilitating illness for almost 8 years.
I can feel sympathetic to your pain and illness, but if you compare it to mine or minimize my illness my ability to empathize with you will go out the window.
Parents, you not sleeping because you have a child is not the same thing as dealing with a chronic illness. You chose to have children. I didn’t choose this. Being tired is not the same as feeling the crushing fatigue of a chronic illness. So no, you can know tired and not have an infant. Stop minimizing everyone else’s experiences because you have a kid.
3. I Have Been Sick For SO Long
Being sick sucks. Being sick for a while really sucks. I get it; I really do. This is not an “other people have it worse thing,” you are allowed to have a hard time. I can support you through that. It is a problem when you say these things to me or other chronically ill people without considering how I feel. Hearing you say that having a cold for a couple weeks as “so long” feels like you are ignoring the fact that that happened to me once, but the difference is my illness never went away.
I have been sick for 7 years, 8 months, and 6 days. I have not gone more than 3 or 4 hours (awake) that entire time without my body reminding me that I am sick, that I am not normal. When you forget that, when you ignore that, it is a slap in the face.
I will support you for the entire time you are sick but please do not forget the hard things I am dealing with. Don’t minimize what I am going through because you are having a hard time and I will not do the same.
4. You Are Lucky
You are lucky you get to take “fun drugs.”
I have excruciating pain nearly every minute of every day. The medicines I take are not to get high or have fun. They hardly take the edge off. I would never take them again if I could survive the pain. Being in so much pain you have to take medicine is absolutely not lucky.
You are lucky you don’t have to work/ go to school.
I was on track to go to medical school when I got sick. I am not lazy or avoiding work. I would give anything to be able to go to school and work. I hate feeling trapped into doing less. It isn’t luck; this isn’t a vacation.
You are lucky you can sleep in.
If I don’t sleep more I can function even less than usual. I am not sleeping in because I feel like it, am lazy, or am a bit tired. I sleep in because I cannot stand if I sleep less than 9 hours. My pain is unimaginable if I don’t get enough sleep. I sleep out of necessity, not pleasure.
The list goes on and on. How inconsiderate are you that you can’t see that having a chronic illness is not in any way lucky?
5. I Couldn’t Do It, I Hate _______
I hate them all too, but when you have a severe chronic illness you no longer have a choice. When people say this I am not sure how to respond. Are you implying I do like these things? Do you think these things are optional? I have to do things I hate all the time to survive.
If you were chronically ill you would have to do all those things too. You do what you have to to survive. What you want, what you enjoy no longer matters when you are fighting every day to survive.
6. You Can Do Anything! Mind Over Matter!
I know you are trying to be inspirational but this is really insulting to disabled people. No matter what I do I will never be able to climb a mountain, become a surgeon, or run a marathon. Being literally unconscious puts a damper on accomplishing all your dreams. And that is what happens when I try “mind over matter”- I faint.
So no, don’t spew that crap to me. I am limited by my condition. Just because you are able bodied do not tell us we all of are able to accomplish anything we put our mind to.
7. I Never Get Sick
People say this with pride to me all the time. The only reason I am sick and you aren’t is chance alone. You are not better than me because you happen to be healthy.
When you say this with pride you make it obvious you think you are better than me because you are healthy. It makes it obvious you think I have control over the fact that I am sick.
8. At Least You Are Used To It
Discounting what I am going through because I go through it constantly is also insulting. My condition causes a different pain every day. It doesn’t get less shitty because I have had it for so long. In fact, it gets harder. It is exhausting and soul crushing to deal with pain and illness this long. So don’t dismiss me because I have had these problems for a while. It still hurts and it is still hard no matter how long it has been.
Up until recently I had given up going to concerts. It just seemed impossible with POTS. A lot of times we are required to give up activities we love for our condition. I think it is important to still have a life- to have things to live for and look forward to. So here are some tips to make concerts a bit easier in the hope concerts will not be added to the list of things we cannot do because of our illness.
1. Call Ahead
The venue makes a large difference in whether I can attend a concert or not. I have had venues, such as Red Rocks in Colorado, make no effort to help accommodate me. In fact, they won’t even call me back about accommodations. Therefore, I recommend contacting someone at the venue prior to buying tickets. Some good questions to ask are:
2. Wheelchairs Help
Having an invisible illness basically guarantees people will not go out of their way to accommodate you. Using a wheelchair means that your illness becomes visible and it guarantees a spot to sit throughout the night.
3. Load Up On Salt & Water
I drink water and load up on salt even more than usual before events that cost a lot of spoons. Talk to your doctor about safe amounts of either.
4. Frequent Breaks If You Get Overstimulated
A lot of sound and noise can lead to me feeling overstimulated and foggy. Taking frequent breaks to step outside for fresh air or to the bathroom keeps the overstimulation from bothering me as much.
5. Bring Earplugs
Some shows are extremely loud and can set off headaches or overstimulation. Having earplugs in case you need them is a good idea.
6. Wear layers
If you have heat or cold intolerance wearing light layers keeps you from having as many problems with temperature. Commonly, these venues get very warm with body heat so the lighter the layers the better.
7. Small Shows And Venues Are Better
Small shows and venues tend to be less warm, less loud, and altogether easier to navigate. If you aren’t too picky about what concert you want to see I would definitely recommend finding a smaller show.
8. Wear Compression
Wearing compression helps me a lot during any event that takes a lot of effort. I find that both tights and abdominal binders are worth the extra heat because they keep the blood pooling at bay.
9. Don’t Go If You Have Something The Next Day
Even with all of these changes going to a concert will likely wipe you out and cost a lot of spoons. I try to only attend if I do not have somewhere important to be or do the next few days.
10. Don’t Feel Bad About Asking For Accommodations
Sometimes I find it difficult to ask for help or feel like I am putting people out. It helps to remember that having a chronic illness isn’t your fault and you deserve to live your life as much as everyone else. Making accommodations is their job and doesn’t take much effort from the staff at the venue. In fact, I have heard that it is one of the easier parts of their job (do you know how many people throw up of concerts?).
Defining Yourself As Your Disability
This article makes a really good point I have been thinking of lately. People should not demand someone with a disability to look at themselves in whatever way you see fit. Don’t complain that they talk about their illness too much. My disability does not define me, but it has shaped who I am. I have to deal with it every single day; it is a part of my life and I will talk about it if I want to.
Firstly, telling people to not “define themselves by their disability” is insulting because it implies that is how they do define themselves. For me and for most people this isn’t true.
Secondly, telling someone to not define themselves by their disability or to talk about their disability less is just ignorant. The people you see every day, the job you go to every single day- those things shape who you are. So who are you to say that a something I deal with every minute of every day should not influence my life or how I see myself? When you hate your job you are probably going to talk about it a lot. In no way does that mean you are defined by that feeling, your crappy job, or how you deal with it. Talking about something that affects you so profoundly absolutely does not mean you are “defined” by it.
Seeing Yourself As Sick
While at the Dysautonomia International Conference a Dr. Paola Sandroni, a neurologist and expert in POTS, claimed that IV fluids should not be given to patients because it makes them think of themselves as sick*. Well, my question to Dr. Sandroni: how is wanting IV fluids to feel less sick going to make me suddenly see myself as more sick?! IV fluids make me feel less sick and more normal. Do you want to know what does make me think of myself as sick? Fainting. Pain. Brain fog. Dizziness. Nausea. Severe tachycardia. Vomiting. Chest pain. Our symptoms make us feel sick and think of ourselves as sick; treatments make us feel better and more normal. Stop demonizing our attempts to feel better.
I have also heard “friends,” family, and medical professionals go even as far as saying that you would feel better if you didn’t focus so much on being sick. Just stop talking about it and it will go away. In some cases, I am sure this is true, especially with patients who have both anxiety and POTS. Most of us do not. Just as many others, I don’t see myself as weak and sick. That is not why I talk about my illness. In fact, I see myself as strong, and a fighter for what I go through every day and keep on going. I recognize how hard it was to ask my friends and family for support. I recognize that I am doing everything I can to raise awareness to hopefully limit both the suffering of others and myself. If I need support to deal with this really tough thing then you can bet I will talk about it, and I’m stronger for that fact. You can’t silence me by demonizing the way I get support and deal with my illness.
*All the other doctors at the Dysautonomia International Conference were wonderful and much more understanding of patient’s struggles. This was just one negative experience of an overall wonderful weekend.