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12 Things to Know About My Illness That Would Help You Understand Me Better


Since I am sick there is one feeling that has never gone and that is loneliness, not because I am actually alone, but because mostly no one can really realize what it feels like to be sick.

I’ve tried to explain and people who love me try hard to understand me, but it is impossible for them to know exactly how it is. I would never give my illness to anyone, but sometimes, I would like them to have it for just one week to help them understand me better after.

During this journey of living with a chronic illness, there are some experiences in particular that I would like them to have, know and feel. This is my message:

1. I would like you to know that my chronic illness is like a big backpack I can never take off.

It is a constant feeling in my body and a permanent thought in my mind. Since I was diagnosed, all my actions and decisions must consider the fact that I am sick. I can never forget it. I need to be aware of my own limits, physically and psychologically.

For me having lupus is my backpack, I’ll have it forever, I just hope it doesn’t get heavier. I also have avascular necrosis (AVN) and I can feel this diagnosis all the time too, but if lupus is a backpack, AVN is like something spreading inside of my body.

2. I would like you to know that I am always in pain.

I can have better days but the pain is never going away. That is why sometimes I don’t want to talk to anyone or my mood is not the best. It is because in the inside I’m just trying to deal with this.

3. I would like you to know that this pain doesn’t stay just in my body, it goes to my soul.

I’m always trying to do my best, but sometimes I just can’t anymore, and I would like you to understand that on these days I am not giving up, I’m not hating anyone, not even me or you, but I need some space. I just need this catharsis from time to time.

4. I would like you to know that I often feel very tired.

I am not the same, maybe you notice it already. I need to sleep more and get ready for big activities. Things that for you are easy, for me are a world of effort. I’m not going where you invited me not because I don’t want to, it’s because sometimes I just can’t. One way to support me is to understand this.

5. I would like you to know that I forget things and sometimes it’s hard for me to concentrate.

This is called lupus fog, and if I always felt that my brain could work really fast, I am not feeling it anymore. I would like you to feel how my thoughts are scattered and I am not as fast in math as I used to be. I would like you to know how frustrating this is.

6. I would like you to know that I don’t want to be sick.

I would like you to know that there are some beliefs that hurt me and some comments people make that are very mean. That’s why I would like you to know that I don’t want to be sick and I don’t like it. I would never take advantage of it. I don’t want anyone’s pity. I would also like you to know that I am not sick because I was sad, depressed, bitter or repressing something; science is still trying to figure out why I am sick, but it is definitely not because of me.

7. I would like you to know that I’ve already received that advice.

I know that you are trying to help, but I already know about that fruit, herb, therapy, new discipline, new kind of yoga, pilates, meditation, diet or anything that you could propose, and guess what, nothing is going to cure what I have. My consultant is who advises me, so why don’t we talk about that new movie? That would help.

8. I would like you to know that I am not the same person.

No one can be the same after this fight, but I try to. I do my best to not forget the person I used to be, but with all I’ve learned during these years, I feel like I am even better.

9. I would like you to know that I am not getting better.

That is what it means to have a “chronic illness,” so please just don’t say it anymore.

10. I would like you to know that I still have dreams.

They might be different, but I still let myself dream. I dream of having a long life beside the people I love, I dream of having children someday if my body lets me, I dream that all the therapy would help me, and I even dream that someday there will be a cure.

11. I would like you to know how scary this is.

Lupus is an illness that goes between flares and remissions, and yes, I am scared a flare could come. But I’m even more scared of how bad it will be this time.

12. And the last thing that I would like you to know is that I won’t give up.

I would like you to feel how a warrior wakes up when you need to fight against your own body to have a good life or even to stay alive. I want to keep fighting and maybe even, one day, see my dreams come true.

This blog was originally published on Chronic Survivor.