How to cope with a hidden disability (Part 1)

We’ve talked about how many people in the world have invisible disabilities. We’ve also brought up just how important it is to know that if you have a hidden illness, you’re not alone. Today we’re going to start with the first in our series of blog posts on how to cope with having an invisible disability. This advice is the result of actions we’ve taken ourselves over the years when we’ve had and continue to deal with our own challenges.  

The first step: Be ready to talk.

Telling others about your condition is pretty key – even though there are millions of people out there with invisible disabilities, most people don’t know about it. If you have a hidden illness, the odds are good that most people around you don’t know it. We’re here to say, let people know. Don’t keep your condition a complete secret. Be prepared to tell people about your condition.

Now, of course, you have to have a game plan for talking about your disability or illness. It’s probably not the best idea to announce to the world all at once that you have a disability – that would be a whole other extreme, and can make people completely dismiss you altogether.

Where you should start your efforts is in telling people who are close to you about your condition – close family, or your best friends, for example. If you’re shy, or worried about their reaction, you should realize that their reaction about the steps you take to manage your symptoms (for example, taking many sick days) is probably more negative than any reaction they may have to you having an illness. Remember: People generally have sympathy for illness.

The second step: Lean on your support network. And if you don’t have one, build one.

In line with being ready to talk, allow yourself to lean on your support network. If you have family – parents, siblings, cousins, or a partner – don’t be afraid to ask them for help, or to accept their help when they offer it. Similarly, if you have close friends, they can, and often will, help.

Now, what happens when you have few of either? It’s certainly possible in this day and age. Well, this is where we start tapping into the resource available in modern life. Thanks to the Internet, many, many support groups and communities have sprung up. There are often whole organizations dedicated to explaining to specific conditions and advocating for people who suffer from them. The American Chronic Pain Association is an example of this type of organization. Use Google or Bing to look up these organizations and join the communities they’ve built. Ask your doctor or healthcare provider for references too.

A quick warning though: Beware of scammers! Unfortunately, while there is a great amount of access to resources out there that weren’t available even a decade ago, the sheer volume of people who are only too happy to take advantage of people in need is astronomical too. Any site or person who tries to sell you something upfront, or who wants your credit card information or other financial or personal details is a site or person to be avoided at all costs. People who want to help you won’t be demanding money or personal information. In a later blog, we’ll explain how to spot and avoid scammers. We’re also putting together a resource page on our site that will list all organizations and support groups that we know to be reputable, so stay tuned for both of these forthcoming resources!

The third step: Arm yourself with a response for hurtful comments.

When we have a hidden disability, we’re constantly hearing unhelpful or outright hurtful comments. For example, if you’re complaining about terrible fatigue that’s so bad that you can’t work for the day, people may respond that they’re really busy too, so you should get over yourself. Statements like really just add to the burden you already have.

In situations like this, stay calm (hard, yes, but important to master) and politely (also hard, but also important to master) let the other person know that you have a serious illness. If you can get across that you’re sick, and, importantly, are calm and articulate in describing what you have, you’ll usually be taken seriously by others. Now, obviously, not everyone will believe it, and that’ll be their problem. But people in general are swayed by tranquil, reasonable-sounding statements. So, it’s important that you practice and prepare to describe your condition and your particular needs in a calm manner. If you’re not prepared, you’ll likely sound emotional (because you probably will be emotional), and that won’t bring the other person around to understand that you’re going through something difficult.

A final word on your own comfort on revealing your condition

Now, we know that what we’ve described above isn’t easy. It took us all a long time to accept and put these actions and attitudes into practice. Also, the decision to tell others will really have to come from you if it’s going to be of any real benefit to you. If you feel forced to tell people, then you’ll likely feel worse for having done so. So it’s totally fine if you don’t want to tell anyone, or to restrict this knowledge from certain people who you’re sure will make life worse for you if they find out you have a disability or serious illness. Overall though, you’ll discover that those who truly care about you will make the effort to at least find out more about your condition and help!

That’s it for today; more on coping next time! Please feel free to talk about how you’ve been coping with your ailments in the comments. Maybe we can all learn something from each other.

Images by Gerd Altmann from Pixabay