Help Friends and Family Understand your Invisible Illness.
Is your invisible illness being seen?
My family are amazing at being understanding of my conditions and situation but I often find that friends just don’t get it. It’s understandable, they only see me when I am feeling great (comparatively).
That is, when I am free from infection and viruses, my dry eye symptoms are minimal, my joints are not in a flare-up, my skin is hive-free, my endometriosis or period pain isn’t severe, my anxiety levels are low and my fatigue has abated for a day. No wonder I can be a bit of a recluse!
Things to learn and know about invisible illness:
People with some kinds of invisible disabilities, such as chronic pain or some kind of sleep disorder, are often accused of faking or imagining their disabilities. These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc. and are not always obvious to the onlooker.
Invisible disabilities are chronic illnesses and conditions that significantly impair normal activities of daily living. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling.*
I wrote this for all of you with invisible illnesses to share with your friends:
When you see me I am at my absolute best (unless I am on the school run or in the supermarket and avoiding eye contact because it is too exhausting to communicate!).
When I occasionally go out at night I have been excited about it for months and my adrenaline is flowing like crazy which gives me an artificial burst of energy. (I will pay for that!).
You might see me swimming or participating in a yoga class. This helps to get my body moving and can be painful, it doesn’t mean that I am physically capable.
My fatigue is not the same as when a healthy person is really tired. It is more like how you feel when you have flu.
As well as my main condition, I often have a whole myriad of other symptoms related to various other parts of my body that you are not aware of. These can range from excruciating dry eyes to hair loss to infections to rashes etc.
My immune system is compromised so please don’t be offended if I don’t want to be around your children if they have chickenpox or if you have shingles or a similar virus.
I often feel so tired and run down that any social contact is very difficult, that doesn’t mean that I want you to forget about me. Please don’t stop inviting me to events. I would love to come if I can.
Please forgive me if I didn’t manage to get you or your kids a birthday present or I forgot a special occasion, sometimes my brain is in a fog and it takes all my effort to remember what day of the week it is!
Invisible disabilities include chronic illnesses such as renal failure, autoimmune conditions, IBS, diabetes, and sleep disorders if those diseases significantly impair normal activities of daily living. Those with joint conditions, Fibromyalgia or CFS who suffer chronic pain may not use any type of mobility aids on good days, or ever.
Chronic Pain: A variety of conditions may cause chronic pain. There may be back problems, bone disease, physical injuries, and any number of other reasons. Chronic pain may not be noticeable to people who do not understand the persons’ specific medical condition.
Chronic Fatigue: This type of disability refers to an individual who constantly feels deeply exhausted. This can be extremely debilitating and affect every aspect of a person’s everyday life. Check out my post on Energy Management for tips on how to make the most of the energy you do have.
Mental Illness: Depression, attention deficit disorder, schizophrenia, agoraphobia, and many other diseases can also be completely debilitating to the person, and can make performing everyday tasks extremely difficult, if not impossible.
Chronic Dizziness: Often associated with problems of the inner ear, chronic dizziness can lead to impairment when walking, driving, working, sleeping, and other common tasks.96% of people with chronic medical conditions live with an illness that is invisible.*Many people living with a hidden physical disability or mental challenge are still able to be active in their hobbies, work and even be active in sports at times. Others struggle just to get through their day at work and some cannot work at all.
So please, if you know someone with an illness or disability that you don’t fully understand. Ask them about it. Find out how it affects them and how you can help. Invite them out and visit or call them, it might be the only contact they have had all day.
If you are the one with the invisible illness, share this post with your friends and family so they can support and connect with you better.
Understanding is deeper than knowledge.
There are many who know you but few that understand you.
* “Invisible Disabilities Information: What are Invisible Disabilities?”. Disabled World.