9 Things People Who Have A Silent Disease Want You To Know

I came across this article written by Mandy Velez, and it pretty much sums up what I’d written previously in my posts on what to say or not to say to someone who has cancer.  Cancer can be a silent disease.  Unless the patient is cachexic or has lost his/her hair, it’s not always obvious it’s cancer.


Typical response from well-meaning people when they find out you have a life-threatening disease!

9 Things People Who Have A Silent Disease Want You To Know

1. Just because we don’t look sick doesn’t mean we’re not in pain.

Invisible illnesses affect nearly 1 in 2 people in the U.S. That’s about half of the population that has an ailment that doesn’t manifest itself physically. But that doesn’t mean they don’t exist. Conditions from depression to Crohn’s disease affect the internal organs or brain and are just as painful as any outward conditions. This is why it’s a bad idea to judge someone’s abilities based on their appearance:

2. Our illness may chemically affect our mood and temperament, and no, it’s not just an excuse.

If you look at someone who has an autoimmune disease such as hypothyroidism, they make look like anyone else who doesn’t have a disease, but that’s because their symptoms are almost all internal. This includes irritability and depression. So if we snap or feel sad for no reason, we aren’t trying to get attention. We mean it and we don’t need the judgment, just to feel understood.

3. Same goes for other parts of the body.

Sometimes, our pain is both on the inside and outside, and you won’t be able to see either (see point No. 1). But we’re not making it up. Yes, our (insert body part here) can hurt at any point, and at the same time that other body parts are hurting. The pain can occur once a month or once a day, and may not have any end it sight. It’s not in our heads and sometimes medicine can’t help. We try not to complain, but if we do it’s because we’re really hurting.

4. We don’t like having to explain our issue any more than you like hearing about it.

When we wince in pain, or take a few sick days and someone asks us what’s wrong, we’ll gladly tell them. But that doesn’t make it any less annoying. And if we do talk about it with you on more than one occasion, it’s probably because we need to vent or desperately want someone to understand what we’re going through. Trust us, if we could get rid of the pain and never have to explain how our body is working against us, we would.

5. If we cancel plans unannounced, it doesn’t mean we don’t want to see you.

When you have any illness, the illness can dictate more than you’d like. Many diseases, especially silent ones, can cause fatigue, depression and flat-out pain that pops up at any moment unannounced. Some days we’ll have committed to an outing but simply can’t muster the energy or make the pain subside enough to really have a good time. It may seem flaky, but we don’t mean it.

6. Just because our ailments are out of sight doesn’t mean they’re out of our mind.

Even though people with silent diseases may not be in a wheelchair, or need IVs or intense medical care, they still think about their illnesses, Whether it’s because the pain is a constant or because the illness has long-term effects, such as infertility or eventual organ failure, we don’t stop worrying about what’s happening or what will happen to our bodies. This causes us almost more stress than the actual symptoms do — not being in control.

7. That said, we don’t need you to remind us of these ailments.

Oh, you know that our illness causes an abnormal amount of weight gain or uncontrollable urges to have to use the bathroom? Great. But it’s not something we need to be reminded of in conversation. As No. 6 points out, we’re already thinking about all the things that we don’t have control of. We don’t need any more reminders. You wouldn’t tell a paralyzed person that you have heard paralyzed people can’t walk. The same goes for silent diseases. Being supportive and positive, however, is always appreciated.

8. We’d rather you be there for us than pretend to understand. We know you don’t.

In theory, it’s nice to hear stories about someone else who has what we have — or about how you got really hurt once and were in pain. But if the person with the same illness isn’t you or you’re over whatever pain you went through, it doesn’t do us all that much good. It’s OK not to understand what we’re going through, but instead of trying to bring up some random person to relate, just be honest. If you’re willing to actually connect us to a person also dealing with a silent disease, however, we would love to meet them. It’s much easier to talk about a condition with someone who understands what you’re going through.

9. We would like you to have empathy.

The biggest thing you can do for someone with an invisible illness is be there for them. Not judge them, not pretend to understand, just believe them when they share their experiences and be there when they don’t want to go through them alone.

This post was written by an A Plus editor who has an invisible illness.

One response

  1. So true. I particularly relate to no 8 and no 9. I hate when someone who has never been ill in their entire life, tells me I just have to “fight” it and that’s all it is “just a fight”. This is my 3rd time “fighting” cancer in less than 3 years. Every cancer patient wants to live more than anything – they don’t need to be told to “just fight” it.

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