Recently I was diagnosed with an invisible illness called Ehlers-Danlos syndrome. It is a rare muscle disorder that comes with chronic pain and is invisible usually to others. My illness is usually invisible until I have a serious injury. There are three different types of EDS; in my case I have the hypermobility version. Its characteristics include the fact that I do not have enough collagen holding my joints together. This disease comes with chronic pain, frequent joint dislocations, thin and easily torn skin, and headaches. Because of these I have had four orthopedic surgeries and have to have my heart and other organs watched, including controlling pain. Having an illness that others do not see and usually have never heard of has really been a challenge. The hardest can be things that others say to me about my health. So these are a few things you should never say to people with an invisible illness.
But you were OK yesterday
When you have a chronic disease everyday is different. One day you may feel as though you can do anything, the next you may not be able to get out of bed. Everyday is different and it takes a lot of understanding from our family and friends to have patience with us in the changing days.
Are you sure you’re sick?
Yes. I am very sure that I am sick. Usually a doctor’s diagnosis and my own symptoms prove that I am, in fact, sick.
It’s obviously all in your head
Of course it is. All my symptoms are fake; everything is being created in my head. That is why I have a diagnosis. This statement is one of the most annoying ones because it is them second guessing something that I am already struggling with.
I understand
Although many of us suffering, myself included, usually reply with “Yeah, OK, thank you," the real answer to this in our heads is “No you do not.” I’m sorry to be rude, but unless you have lived in my shoes, gone through all my struggles, you in fact do not understand.
You complain a lot.
This is one statement that actually makes me worry and be self-conscience more than it does annoy me. Living with a chronic disease, an invisible one in fact, usually makes the patient feel as though they are annoying others when they ask for help. So when I am told I whine a lot, it makes me feel badly that I am annoying them.
I’ve never heard of that.
To be honest, neither had I until I was diagnosed. But just because a regular ordinary person who has never been to medical school hasn’t heard of a disease or illness, does not mean that it does not exist. This makes it hard for people that think they know everything to understand, but it is true that although you do not know something exists, it doesn’t mean it does not.
Anytime they compare your illness to a more well known illness that is nothing like it.
The first week that I was diagnosed people began to try and understand what I had. I am thankful for that, but the problem was that to understand many people began to compare it to other diseases. Everything from MS, ALS, and cancer. These comparisons were like comparing apples to bananas. This also began to worry my parents who were new to my disease and people who had no knowledge tried to make connections. I am so thankful for people trying to learn, but unless you are educated please do not try to compare me to another person.
Have you tried (insert any crazy way to cure me or “make me feel better”)?
Anyone with an illness hears these crazy cure alls all the time. One day someone told me if I drank a gallon of orange juice I would feel better. One told me to drink more milk and do yoga. (Yoga is actually a terrible idea for someone who dislocates easily). Unless you are my doctor, please do not try to give me a cure all that you saw on the internet.
Are you dying?
In my case, luckily, I am not. And many of the people I know with these invisible chronic illnesses are not either. So no, I am not dying. That also does not mean what I am going through is not real. It is just as real.
You don’t LOOK sick
This one is the worst. It grinds my gears. Just because I am not in a wheelchair, look sickly, or can’t breath, does not mean that I am not sick. Just because I am not deathly ill and can still walk doesn’t mean that I need to look a certain way to be sick. I hate that for some reason illness has a ‘look’ that comes with it, and if a patient doesn’t look like it then they are in fact not sick. Everyone looks different in the first place, meaning everyone looks different sick too.
