Living with an Invisible Illness

The term ‘disability’ is used to describe someone who goes through their everyday life with the constant presence of a physical challenge.

Now picture a disabled person.

Are they in a wheelchair? Are they blind? Do they have a physical manifestation of their disability? Yes, these are all examples of disabilities — but they are not the only examples. Some disabilities are invisible.

What are Invisible Disabilities?

This is an umbrella term that covers a multitude of ailments. People suffering from fibromyalgia, chron’s, or multiple sclerosis are actually fighting a battle every day. Just because you can’t see their symptoms, doesn’t make them any less real.

Their disabilities can be just as challenging, and be a real source of physical and mental pain.

If invisible illnesses were visible, this is what it would like… #InvisiblyDisabledLooksLike #EhlersDanlosSyndrome pic.twitter.com/9WYVPksSHE

— The Chronic Theory ♿️ (@ZebraOrphans) October 23, 2017

Messages from people who don’t look sick:

There are hashtags like #InvisiblyDisabledLooksLike or #makeitvisible, but there is still a stigma – and a lot of assumptions and misunderstandings surrounding hidden disabilities. Here are some things that people who don’t look sick want you to know.

“Just because I look good does not mean I’m feeling good.”

“We are conquerors, we are survivors, but we are also sufferers. It is commonly misunderstood that a person cannot be both, but I wake up and go through each day understanding the reality of my health circumstances, which includes being honest with myself and those around me. Discussing personal limits and honouring the body’s boundaries should not be taboo topics.”

“It’s beyond my control to not judge myself for my decisions. I can’t help but feel frustrated and anxious throughout the day. It’s not my choice to be this erratic, trust me, and anyone else that lives with mental health issues didn’t choose this path, either.”

“People always assume I’m lazy when they have no idea how much effort it takes to just be up and about.”

“I wish people wouldn’t jump to conclusions based on appearances. Even though someone who is chronically ill may look ‘healthy’ and act ‘normal,’ we are still chronically ill and we still struggle on a daily basis to do simple tasks and fit in with everyone else. Having my makeup done and wearing nice clothing doesn’t automatically make {me} healthy.”

“Even on a ‘good’ day where I manage to get stuff done, I’m still in pain — it’s just less painful than when I’m stuck in bed. I literally am in pain 24/7, the only variable is the severity.”

“I have pain 24/7. There is no minute where I am not in discomfort. Some days are worse, some are bearable. But I am never pain-free. You don’t see it because I’m strong. I avoid company on my bad days, so you have no idea what pain looks like when it’s written on my face and I’m ready to give up.”

“When I look my best and laugh the loudest is probably when I feel I need to hide a health issue. I secretly wish someone would see through me and tell me it’s OK.”

What can you do?

As much as you probably wish you could – you can’t magically make everything all better. But here are some things you can do:

Check-in. If you have someone in your life suffering from a chronic illness, chances are that they will struggle to keep in touch. So make sure you reach out and let them know that you care and that you’re there for them if they need anything.
Listen. Without judgement. Without advice. Just listen.
Be flexible. Depending on the kind of day they’re having – they might need to change plans, be late, or reschedule. Try to understand that they aren’t doing it on purpose.
Learn. Taking the time to learn a bit about their illness will mean so much to someone who is suffering from it every day.
Encourage. When they’re having a pity party, don’t join in! Instead, offer words of encouragement.
Support healthy habits. It’s not your job to enforce healthy habits, instead find ways to make it easier. Suggest going out for a walk, instead of sitting down for coffee. Or make sure there are healthier options in the house, instead of junk food.
Be present. Your loved one needs more than an uplifting text (even though those are nice), they need you to physically be there for them too.
Accept the change. Even though they may not be like they used to be, it’s important that you don’t compare them to their old selves. Know that their heart is the same, and embrace them as they are now.
Be in it for the long haul. Chronic illnesses are chronic. They may seem like an obvious statement – but it’s important that you don’t expect it to go away. Your loved one will likely be dealing with this for the rest of their life. They will have good and bad days, but they will need you through all of them.

Each person is different, and so is every disability. Take the time to listen to someone with your ears, instead of judging with your eyes. And the next time you’re tempted to tell someone they “don’t look sick”, stop, think, and maybe offer a word of encouragement instead.