Things people with Chronic Disease's wish you understood
When you hear the words "Chronic Illness" or "Chronic Disease", whats the first image that pops into your head? An elderly person knitting, complaining of their Arthritis? Hospitals? The sad reality is, Chronic Diseases (A long lasting condition that can be controlled to an extent, but not cured) are not just limited to the elderly.
In February 2016, my life was turned upside down when I was diagnosed with the auto-immune disease Lupus. I'd been through a series of tests to try and get some answers for a while, and when I did - as much I was happy to have an answer... It was not the news I wanted to receive.
Getting a life changing diagnosis at the age of 22 turned my world upside down. Learning that I have to have regular blood tests to check my organs for damage and take dangerous medications just to stop (Or possibly slow down) the damage. Having days where I'll be fine and feel okay, then the next days I'll be confined to bed in agony.
It's hard enough dealing with all of these issues. The social stigma attached to chronic illness and invisible illness is still very much alive. In this post I'd like to share a few things I'd like you to understand about chronic illnesses, and invisible diseases. I'm sure other Spoonies will agree with this list.
1. We don't want pity, we just want love, compassion and understanding: We just want you to understand, if we say we're sore - it's so you're aware. It's not a cry for attention. The lack of understanding we receive is very high, people assume when we say we're hurting we're clucking out for pity or attention. It's anything but, please try to listen, be compassionate - and we, of course do understand if you don't understand.
2. Our disease's are not imagined, and most definitely are not in our heads: I have spoken to far many people who have been told by family, friends and even doctors that their pain and symptoms are all in their heads, and then when they finally find a competent doctor or consultant, they have been diagnosed with something life changing. Invisible illnesses are real. Lupus is an invisible illness. We may appear healthy, but we're not.
3. 'The Spoon Theory': Not that kind of spooning... 'The Spoon Theory' is written by Christine Miserandino from butyoudontlooksick.com. 'The Spoon Theory' is a disability metaphor used to explain the reduced amount of energy available for normal day to day activities of living and tasks that may result from disability or chronic illness. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day. We live by this, and most of us are known as Spoonies, with affection.
4. If we say we can't make it out, we really, REALLY can not make it out: Unfortunately, canceling at the last minute comes with the territory. We don't like to do it, it can ruin friendships groups, and we don't want that. If we push ourselves, we can seriously hurt ourselves, causing flares and sometimes hospital visits. Please, respect when we say we can't - don't be angry. It's not our fault.
5. Having a chronic disease is not the same thing as having a cold: I'm sure you have good intentions when you say something like, “Oh, I’ve also been feeling kinda sick,” but, sadly those words do not always convey the empathy you may intend them to. You see, the thing is coughs and colds and fevers and whatnot are temporary illnesses. They may cause you discomfort for a week, maybe two at the most and you can move on, and forget it ever happened. Most chronic illnesses are there for life. Many chronic illnesses also don’t have a cure, so this could be something a person lives with forever.
6. Please, don't always make alcohol part of the plan: Of course, some folk can drink it, but sometimes only in small amounts. In the months during or after a flare, drinking alcohol may be completely out of the question. Certain medications might make it impossible to drink as well. For example, I take Co-codamol and Plaquenil (hydroxychloroquine), I can't drink on either of these medications, as it can cause serious side effects.
7. "I can't, I have a doctors appointment that day" Is never a lie: Doctor’s appointments can be part of everyday life for people living with chronic disease. I see a doctor very regularly, and I see a consultant every 2-6 months. If someone says they're seeing a doctor or they have a hospital appointment, it is not a lie. Sadly, things like blood tests, CT scans, colonoscopies, etc. are sometimes required to make sure everything is functioning the way it should be. Once again, compassion is always appreciated.
8. Finally, things you should never say to a chronically ill person:
“You don’t look sick to me.” -
- Not everyone “looks like” what is happening to them. You would never say “you don’t look like someone who is going through a terrible divorce”. Not all illnesses are visible on the outside. And the chances are, on the days that you are seeing someone with a chronic illness, it is one of their better days because they are out at all. Everyone is going through some kind of struggle in their lives, and chances are, you can’t see it on the surface.
"You're too young to be sick"
- I get this one a lot, and I'm sure other chronically ill people in my age group do too. We all seem to expect teenagers and people in their 20's to be the picture of great health. Sadly, that's not always the case. Illness does not discriminate, age is sadly, completely irrelevant here. Young does not always equal completely healthy.
“I’m sure things will get better.”
- Sadly, in most cases of invisible or chronic illness, things may not ever get better and in fact, may get worse. Some of us do not not what the future hold health wise, and have to cancel big life plans. So, no. Things more than likely are not going to get better.
“My friends cousin’s best friend who has your disease is doing great!”
- Just because you may know someone with the same disease as us doesn't automatically mean we're fighting the same battle as them. For example, there are four different types of Lupus.
Systemic Lupus Erythematosus (SLE), SLE is typically the most common form of Lupus and is generally considered more serious than the other three forms. SLE can affect many parts of a person's body, including kidneys, heart, lungs, brain, blood and skin.
Cutaneous Lupus Erythematosus is limited to the skin. Although Cutaneous Lupus can cause many types of rashes and lesions, including across the face.
Drug-induced Lupus Erythematosus is a lupus-like disease caused by certain prescription drugs. The symptoms of drug-induced lupus are similar to those of systemic lupus, but it very rarely affects major organs. The drugs most commonly connected with drug-induced lupus include: Hydralazine, treatment for high blood pressure or hypertension and finally, Procainamide, treatment for irregular heart rhythms Isoniazid—treatment for tuberculosis.
Finally, we have Neonatal Lupus. It is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb. At birth, the infant may have a skin rash, liver problems, or low blood cell counts but these symptoms disappear completely after several months with no lasting effects. Some infants with neonatal lupus can also have a serious heart defect. With proper testing, physicians can now identify most at-risk mothers, and the infant can be treated at or before birth.
“You’re so strong! I wouldn’t be able to walk around looking like that.”
- Walking around like what? I'm dressed like a normal person! Yes, I may have a rash or I look tired... But you're the only one drawing attention to it! It's hard enough leaving the house. These sorts of comments don't make us feel "strong" they make us feel weak, and like we're freaks.
"You should try this amazing herbal remedy I read about, it can cure whatever you have."
- NO! NO, NO, NO, NO... NOOOOOO! Most chronic illnesses DO NOT HAVE A CURE... It's not going to happen, and we're not interested.
“It could be worse.”
- Could it? Yes, you might be right - it could be. But really, you do not know that. You don't know what we go through day to day. Normal daily tasks like bathing and getting dressed use so much energy, being tired after getting dressed most definitely wasn't my choice of lifestyle. I, personally am still trying to get used to my diagnosis. It still haven't gotten used to it, and I regularly hurt myself learning my limits.
"You need to get more exercise."
- In my case, most basic exercises hurt me. Basic stretching can leave me in tears, and has on many occasions. I can assure you, on my good days - I embrace them and get as much exercise as I can, but not for my chronic illness, as it makes absolutely no difference.
"You take too many medications"
- I can assure you, including myself, not everyone wants to just pop a pill to solve a problem. If there was a magic off button, we'd all use it. People with chronic illnesses do many, many things to try to live as normal life as possible, and medication is one very small piece of that puzzle. You need to remember, it is not the medication that is making the person sick, they're bodies do a good enough job of that themselves. Sometimes these medications can have bad side effects, but we only put up with side effects if the medicine makes enough of a difference that the side effects a better choice, and in my case... It really is a better choice.
Thank you for reading!
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Lisa ♥
