a person holds up a card with a big fake smile on it and covers his own face

Mental Health and Having a Rare Disease Is a Double-edged Sword

Having a mental illness is a double-edged sword. If you say too much, you're a complainer. But if you don't say anything, people think you are fine.

Let me just say I, in NO way, am either.

I am someone who mostly wears my emotions on my sleeves. If you see me, you usually know how I am feeling – both physically and mentally. At times, I have hidden my feelings and didn't show any problems. I heard the dreaded, "But you look good," so many times, and I hated it. I hated that people said that to me. I just acted the way I did to make others feel more comfortable.

The toll on my mental health

One major problem with doing that is that it has a long-term effect on my mental health. How? I am not being truthful to myself. I am not acknowledging my true feelings. I had trouble realizing what I was and who I was.

When it comes to mental health and physical health, they both need to be in sync. If you acknowledge one and not the other, you are shorting yourself.

You see, I did that all my life. I didn't want people to know the real me. I was ashamed, and to tell you the truth, I am still ashamed of myself now. Why? I look at where I am now, and I never thought I would be here not only physically but also financially and mentally.

Letting go of the past

Have I done things I am proud of? Of course. But here is where things are in my head: for everything I have done right, my mind goes back to the things in life I have done wrong. It is not anything put on me (well, some of it is), but it is the pressure I have put on myself. That pressure is more than anyone else could put on me.

Don't get me wrong. Sometimes I can't believe that I have done some of the things I have done. But I also look back and say, "Why did I have to take the rough path in life?" I know I caused enough of my own problems growing up, but we learn from our mistakes and should move on. Well, one of my problems is forgiving myself; it's not such an easy thing for me to do.

Looking ahead and coping with a rare disease

In my life, I have dealt with many different health issues. Those issues helped shape who I am, how I react, and what I have done in my life, both mentally and physically. Some of my decisions were right, some were wrong, and others were very wrong.

Either way, they were made, and I can't change them. I had to adjust to those decisions. I had to learn from them as well. Some were harder to learn from. Or was it that I was too stubborn to learn? Regardless, they are done and in the past. Do you know what I realized? It was easier to type that than get past them in my mind.

I know I am not the only person who deals with the physical and mental fight. Many people dealing with rare diseases deal with this all the time. It is hard to speak about it.

Remember one thing: you are never weak if you ask for help. You are strong! Knowing when you have too much and can't do it all yourself takes strength.

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