black and white photo of a woman wearing a coat and standing outside

I have received a lot of bad advice over the years. Believe me.

I don’t think I could sum it all up if I tried.

The one I’m going to address today easily falls in the top 10 worst pieces of advice I’ve ever been given:

Don’t talk about your pain.

I’ve heard this from medical professionals over and over and over again. I’ve heard it told to my parents. I’ve seen it written on cheery, colorful, little print-outs that doctors send you home with. I was told this as a child.

It disturbs me to think how many other parents and their kids hear this advice and take it to heart. I suppose I should tiptoe around this more, but I’m a very direct person. I find it much easier to just say it outright. I can’t advise you to go AMA (against medical advice). I’m just some chronically ill woman typing this up while I watch the rain patter against the window. I won’t pretend to be anything more. This is my outlet where I hope that I can at least encourage a few fellow strugglers. I’m not an expert. Don’t take my advice as such.

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What I can tell you is why I did what I did.

I got really sick of being told I was fixating on my pain too much. I had doctors who said I should go the rest of my life without mentioning it. That I should pretend it didn’t even exist and go live my life. They thought my pain was “all in my head” and that by not thinking about it, it would go away.

The problem with that… is, well, just about everything.

I did what they asked for months. Long story short, because of that and numerous other factors, I ended up more depressed than I’d ever been. I considered suicide more seriously than I ever have. I felt like I was standing alone on an island, and each time the waves went out, they sucked more sand back into the sea, leaving me with less and less land to stand on. Miserable, wet, cold, desperate and running out of time.

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Expressing myself is the only thing that has given me a sliver of relief. They took that from me, told me it was wrong, and sent me spiraling. I no longer reached out to anyone on bad pain days. I pushed through when I most certainly should not have pushed through. I put on a happy face when all I wanted to do was scream. It was like painting an empty shell. It looks great, but nothing can change the fact it’s still hollow.

Now, I don’t mean to say that after all this I talk about my pain constantly. I don’t make it the focus of every conversation. I don’t fixate on it day and night.

But I’m real.

And if someone I know and trust asks me if I’m hurting, I’m honest.

This is where we find the huge gap of misunderstanding between doctors and patients.

Doctors (and, at times, friends and family as well) seem to think that acknowledging pain is the same as obsessing over it. There is an enormous difference between the two. One is stating facts about your current reality and getting support, the other is an unhealthy fixation. I cannot count the times I’ve had doctors think that healthy discussion about pain was me being obsessive. It is almost laughable. Living in denial and refusing to talk about chronic pain is what’s recommended? Encouraged even? But stating how I feel physically and emotionally, processing it all and getting support – that’s unhealthy? Excuse me? In what universe does that make sense?

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When I followed the no-talking advice, I had therapists that were concerned by how much I was able to hold in. I have unfortunately cultivated the ability to hold back my thoughts, feelings and frustrations like a dam until it all becomes too much and comes flooding out. I wonder why?

I’ve been told all my life that talking about pain would make it worse. In reality, nothing can show me that someone cares more than when they ask about my health. Because very few do. My inner circle is small, and if someone knows me well enough to see past my mask – to see the pain I’m so good at hiding – I feel less alone. Being able to confide about my health takes such a weight off my shoulders.

I think that refusing to talk about pain only makes it more unbearable. This is what I have discovered in my own life. Only in going through the risk of opening up to others, have I actually been able to let go and release some of the tension I hold in me. Expressing myself has saved me on many a night when suicidal thoughts came knocking on my door. I could tell someone, draw, paint, journal, write poetry – it all gave me a foot to stand on. I could keep going if I knew that I was understood and that I wasn’t alone. If I’d followed those doctors’ advice, I don’t think I’d still be alive.

It’s almost funny, isn’t it?

That doing what everyone told me would hurt me is exactly what’s begun to heal me.

I am not their “crazy” patient. I am not their “overemotional teenager” or their “hypochondriac.” They don’t get to label me anymore. I’ll no longer shrink down in shame. I will no longer go to ridiculous extents to hide my illness to make other people feel more comfortable. I don’t need their validation. If they want to know the real me, they’re eventually going to have to see my very real pain.

I’m finally speaking up.

I hope you’ll join me.

The silence has gone on for far too long.

Read more stories like this on The Mighty:

When I Was Asked By a Psychologist If I Considered Accepting My Chronic Pain

Making Peace With Bad Days in My Life With Chronic Pain

The Importance of Finding the Right Massage Therapist for Your Needs