11 Things I Want You to Know About Life With Chronic Illness

In honor of World Arthritis Day 2016 on October 12, I wanted to submit a story so others can hopefully understand what people with arthritis feel and go through in their lives, despite how they may look on the outside.  Let’s break the stigma out there that someone with rheumatoid arthritis is a 95-year-old person who has joint pain due to age. I’m hoping to get the word out that rheumatoid arthritis can occur at any age, which was for me, at 28 years old. My life completely changed in a matter of months after being diagnosed, with no time to hold onto my previous life.

I never would have thought that two years into discovering that I had autoimmune issues that I’d still be at the point of just trying to find a medicine to help me. I imagined, by this time, I would know exactly how to cope with my health issues, and I’d be able to control flare-ups from happening. The doctors do not warn you how life-changing your illnesses can be. They cannot fix you in a matter of a couple of months, like I had assumed. I feel stuck in some kind of weird cyclical pattern, and at times, I think that this is all a dream. Chronic illness, and specifically in my case, rheumatoid arthritis, Sjogren’s syndrome, fibromyalgia, and depression, is something that you have to learn to live with and I’m still trying to accept that this is my new life. There are times, like today, where I tell myself that I can’t do another day of this pain. I’ve come to realize that if I tell my mind that I need to keep going, that I’ll be OK, but it’s the most difficult thing to do.

It is so hard on me, and I know it is just as hard on my family and friends who do not understand fully the complexities of my illnesses. With hope of reaching other people’s families and friends as well, I give you my list of what chronic illness is like to me. Everyone has different views on things and experiences different symptoms, but hopefully this will resonate with most people in the chronic illness community. If anything, I just hope for people to gain understanding from it.

So, here goes — 11 things you should know if you or someone you know has a chronic illness.

1. Having chronic illnesses can make you the most insecure that you’ve ever been in your entire life. I feel terrible on the inside, and it makes me feel ugly and disgusting on the outside. I have personally never needed so much assurance in my life that I look OK before going to an event or outing.

2. For many of us, our least favorite phrase that people say to us is “but you look good.” That’s really nice of you to say that, but it doesn’t do anything to self-esteem. It doesn’t change how I am physically or emotionally feeling at all.

3. We are not lazy. I am not sitting at home all day snacking on food and watching talk shows. I’m actually calling doctors, running to pick up my meds from the pharmacy, keeping a health diary, trying to deal with my reactions to my medications, making appointments, and going to appointments. In short, we are doing all the things possible to advocate for ourselves and take care of ourselves.

4. Those times when you may see your friend or family member who has an invisible illness on social media looking great or attending an event and trying to understand them, please know that it can take days for us to recover from that outing. Just this past weekend, I attended the wedding of my fiancé’s brother. Not only did I get extremely sick during the event, but it is now four days later, and I am still struggling majorly. What the eye sees isn’t always the actuality of the situation.

5. Every day is different. Chronic illness is completely unpredictable. This is why it is so difficult to make plans. The pain you felt yesterday might be in a new place today, or you may have gone to bed with a backache and wake up with a headache.

6. If you are completely fatigued and exhausted, rest. Don’t let those people from your past or assumptions in the world get in your head. Take care of yourself and listen to your body. You are the only person who knows how you are feeling inside.

7. I didn’t learn this one until my primary doctor made me aware, months after my diagnosis, and it shocked me. It really put things into perspective for me. Having chronic illness, invisible illness, whatever term you most identify with, is going to be with us for the rest of our lives. There is no getting rid of it. Yes, there are medications that can make it better or relieve some of the symptoms, but it will stay with us like a personality trait. We hope our family and friends can come to this realization and stray away from using terms like “get better” or “get well soon.” We’d like to, but it’s not like a surgery or something that you can just manually fix within us.

8. Asking us questions about our illnesses or what we are going through means so much to us. It means that you are trying to understand and to be there for us. We are not ashamed or embarrassed to talk about it.  Sometimes, we think we talk too much about our daily struggles, so it is really nice that you would reach out to us just to check-in.

9. People with chronic illness are allowed to have a bad day. I have had many experiences with people who make me feel that I am not entitled to one with all that I am going through. If I hold myself together for six out of the seven days, and I have that one day where I cry my eyes out, please just accept that I’m trying my best. I may not be as strong as you, but I’m being the strongest that I personally can be.

10. Chronic illness changes us in so many ways. The biggest thing you can do is just be a support system.  Send us little inspirational text messages every once in a while, tell us we’re brave, or send us a card! We can’t get out like we used to, and we often find ourselves feeling lonely. It makes me feel good to know someone is thinking of me.

11. Lastly, but perhaps the most important thing, is that we need you to listen when we tell you something.  The worst thing is feeling that your loved ones and even doctors do not believe you. If you feel like you are not being heard or people think you are lying, you must take a stand and be true to yourself. Seek a second opinion. Weed out those in your life who are not concerned about your health. I will end with this little story, which thus proves my point.

I was seeing a rheumatologist and told her each time that I went to see her that the pain in my hands was so bad that it was waking me up at night.  She swore to me that I didn’t have rheumatoid arthritis and pushed in the direction that my pain was mental pain, or in other words, my depression was making my body hurt. I sought out a new rheumatologist for a second opinion; he ordered an MRI of my hands. With one simple test, he saw the damage RA had been doing to my fingers. I did, in fact, have RA, but my other rheumatologist was not listening to me when I put my life in her hands.

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