The Mighty Logo

The 'New Discrimination' Healthy People Need to Understand

The most helpful emails in health
Browse our free newsletters

In a world where there are many types of discrimination, such as race, religion, sex, age, marital status, physical or intellectual impairment or sexual orientation, to name a few, I don’t think many people have caught on to the “new discrimination.”

Why is that, I wonder? The answer is very simple. They can’t see it — and most people don’t even believe you if you try to explain it to them. But they may discriminate because there are many who can’t wrap their brains around it. Why? Because this is an invisible and insidious entity that allows you to look normal on the outside while you struggle on the inside, both at a physical and mental level. The name for this entity is “chronic pain.”

So those of us who have chronic pain (or any chronic illness where you still look healthy on the outside) learn to become real actors. In fact, we should all get Academy Awards because we do this so well. We go about life looking like any other person in the street on the exterior, but we hide the pain and mental anguish on the inside. 

Why do we do this? There are many reasons why multitudes of us don’t speak out and admit we have a chronic illness. A few of these include:

• Fear of not being believed

• Fear of having to explain something so complex (because all chronic conditions are complex) to someone who is healthy, and who would probably never be able to relate. I mean, even most doctors and specialists can’t relate. The government may not believe you either when you apply for disability pension, because you can’t x-ray chronic pain and all the sensations it brings on; nor can you x-ray the anxiety and fear that comes with it, or the post-traumatic stress you later develop because you feel you’re constantly walking on eggshells and don’t know what will become of you in the future.

• Fear of scaring away friends because you may have to cancel an outing at the last minute, or you can’t sit for two hours at the cinema, or even go for a long drive in the car. You see, you generally don’t get any warnings when you’re going to flare up badly — and even if you’re not flared up, sometimes you’re still in so much pain that you can’t sit for long, or walk for long, or lie down for long.

• Fear of scaring off partners. Many don’t want to end up with someone who has so many limitations. It’s all too hard for them

• Fear of scaring or putting off loved ones such as family — yes, that’s right, family! They can’t always relate unless they can feel what you feel.

• Fear of not getting a job (if we can work, that is) because many employers discriminate, especially if you need to have flexible hours or work from home. I worked in the field of human resources for over 35 years, when I used to be healthy, and I’ve seen all sorts of discrimination coming from the most senior of managers. In fact, even I had to give up my last job because my ex-boss did not want me to work from home even though I could do the job 100 percent remotely. And before you ask, “Why didn’t you sue them?” The answer is that I was a freelancer, and there are no laws protecting freelancers. If the client, in this case my ex-boss, doesn’t want you to work for them, they simply terminate the agreement.

I could go on and on about the fears that plague those of us that “haven’t come out of the closet” about our chronic condition. But today I finally decided, “To hell with it! I’m a person, pain or no pain, and I’m going to tell the world that I’m a spoonie!”

As for why it took me seven years to come out of the closet… Well, many prospective employers tend to check you out on social media these days before they employ you. They want to know more about you. So if they happen to read an unguarded comment I may have made about my condition, a highly complex pain syndrome that involves pelvic pain, back pain, leg pain, perineum pain, plus a number of other pain locations, who is going to give me a job?

“OK, but what about the disability pension?” my cousin  on the phone from Canada suggests. “Surely, the government will help you.” My response is laughter that brings tears to my eyes. Laughter filled with bitterness and resentment at being treated like a third-class citizen, feeling denigrated, humiliated, not believed, treated with arrogance, and the list goes on. I tried to get the pension, but I was rejected twice because I didn’t look sick to them. In fact, one insensitive individual said to me, “Well, if you don’t want to present proof, there’s nothing I can do about it.” This was after I gave him all the documentation I had from my doctor, physiotherapist and psychologist. But I could not produce an x-ray showing neuralgic pain, or fear, or anxiety, or the stress caused by the humiliation the Department of Human Services put me through. And stress is the worst enemy for someone with a chronic condition!

Meanwhile, my cousin becomes disheartened. She really wants to help me. And then she says the thing that makes people with chronic pain cringe: “But can’t they burn the nerve that’s causing this? I know a woman who had a kind of pain condition and they burned a nerve or something, and this cured her. Or maybe, did you think of trying … yadda, yadda, yadda…” My eyes simply glaze over while I listen to her many suggestions — all well intended, of course.

God bless her little cotton socks! I think before replying, “My pain is neuralgic in nature, and it turned chronic when the central nervous system became sensitized. So all my nerves crosstalk now (it’s called “smudging). So basically I could get neuralgic pain down the back of my left leg and big toe, but the source of the pain could be coming from the right side of my sacrum.”

If you read this blog post in its entirety and learned about terms like “smudging,” “hyperalgesia” and “allodynia,” not only will you now have a much better idea of what chronic pain is all about, but you’ll be thousands of miles ahead of the general population, including those who choose to discriminate against people who look healthy, but who have chronic pain — the new discrimination!

So next time you see a healthy-looking person, don’t be fooled: They could be someone with chronic pain who has not yet come out of the closet.

Follow this journey on Sylvia Massara.

Originally published: November 3, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home