The Hardest Part of This Disease

Last updated: February 2022

How many of you wish more people around you would understand? How many of you wish living in this world, as a chronically ill person, with an invisible illness, would be a little easier on us? How many of you wish people would just be more kind and understanding?

Living with an invisible illness

Ankylosing spondylitis has robbed me of many things in my life. It has robbed me of many special moments. The hardest part is not the disease itself, but it is the constant battle of explaining to everyone around you, the big WHYs.

It is always trying to justify your illness. It is always trying to prove that you are not lying. It is trying to convince them about how you are not lying. It is the constant judgment people have of you. It is the secretive talks behind your back that they think you can’t see or feel. It is the constant comparison to others when you tell them what your disease is all about.

It is how you are struggling, having a hard time dealing with everything, and all you need is support and understanding. But instead, you hear, “So and so has this, and is able to work," or, “So and so has this and is moving and being active, you should do the same." Not everyone is the same on how these diseases affect one another. Just like medication doesn’t work the same for everyone.

Hurtful comments

I have lost a lot of friends and family while living with ankylosing spondylitis. I know now this is not my fault and I have no control over it or anyone, but it does hurt a lot. It hurts a lot when the ones you thought were your family and friends all this time make you feel like there is something wrong with you instead.

I heard comments from close family saying, “She doesn't bother with anyone.” I heard comments saying, “Maybe it’s all in her head.” I heard comments saying, “How far will she take this.” The best one is, “Is she better now?" Is she better now? I laughed so hard when I heard this comment.

Who would enjoy feeling this way all the time? Who would want to take numerous medications or stay in bed every day? Who would want to have blood test after blood test, scans, and MRIs, and go from doctor to doctor spending hours waiting to see them?

So much they can't see, so much they don't know

Little do they know how every day I wish for this monster to leave me alone. Little do they know how I would love to have one wish that could come true, and it would be to get rid of this monster that haunts me every single day, to have another chance of being me but pain-free. Little do they know how this disease makes me feel trapped in my own body and like there is no way out. Little do they know how I had dreams that I had to let go of because my future is so unpredictable.

Losing friends and family has been really hard. For the longest time, I kept blaming myself for what I did wrong or what could have done differently. It takes a lot of strength and courage to realize those are not your people right now. Whoever is meant to be around in life, will be there.

What you can and can't control

In order to heal, you need to clear out anything from your path that is toxic or brings you down all the time. That is the only way to heal in your journey and get a step closer to a better, healthier you. Every day, only you know what you go through and how hard it can get. You can keep on trying to change your surroundings or how they see you, but if they don’t want to understand (or at least try to) that is not in your control. That is not your fault.

You are not in control of others' actions and emotions towards you. One thing that you are in control over is who you keep letting into your life. You are in control of how you take each step. You are in control of making your life the best that you can right now. You also deserve to be happy. You also deserve to have a better quality of life. You also deserve to live in a world that makes you happy.

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