The First Ugly Truth About Having a Chronic Illness

The tricky part of sharing your story is finding the right way to go about it. I’ve been trying to come up with the best way to get my words out, but without sounding preachy or pitiful. I’ve always had this issue when it’s come to my illness, though.

I never wanna delve into details because it makes me paranoid. Paranoid that I’m going to sound like a hypochondriac, and paranoid that people will think I just want a pity party or am looking to score pills. Paranoid that people won’t take me seriously, and will think I’m just adding more details to a sob story. So many times I’ve held back all that’s wrong because I don’t want to come on too strong. Sound familiar? The first ugly truth of having a chronic illness: you may often feel guilty or shameful for being in pain or being sick.

 

I cannot count how many times I’ve answered the one to 10 pain scale question with a lower pain level than what I was feeling. I wanted them to know I was hurting, but I didn’t want to sound like a liar. Once you see the disbelief on their faces when you say it’s an eight or higher more than once, you tend to try anything to get them to listen.

I have maybe three or four people – one being one of my specialists – who I am as open with as I can about my pain and everywhere it’s hitting me all at once. And this is a decade into this journey of the still unknown autoimmune disease I’m fighting to figure out. I’m hoping that by writing about all the big and small things that have been affected or have changed in me, I’ll be able to help myself be open with more people. And hopefully help some others do the same thing.

I’m going to be honest with you. You may feel shame about what you’re going through. You may feel guilty about having to change your lifestyle and habits, which can push people away. You might run through your past memories, pushing yourself to find something that caused this. You might have times where you just cry from the frustrations of not knowing what is going to happen.

I have beaten myself up many times over this.

Now, the good news. Hey, this isn’t your fault! No, really. This illness has brought on all this stress and fear and just dumped it on your shoulders. The illness can do such a number on your mental health. Whether you want to try medication or not, it’s important that you do three things: Do your research, never be afraid to ask questions and don’t give up on yourself. You are worth it.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via lupashchenkoiryna.