How Loved Ones Can Help Me Live With My Invisible Illnesses


I have two invisible illnesses, rheumatoid arthritis (RA) and fibromyalgia, and I’ve had a terrible few days. I’m not asking for sympathy. I am determined. I want to take charge of my life again, but I can’t do it without your help.

I want your understanding. I may choose my absence, but that’s not how I want it. My heart wants to be around even when my body doesn’t. Don’t take my occasional absence personally.

Don’t forget about me. If I can’t go out, even after you’ve asked on multiple occasions, please keep trying. I really want to go but if I decline, I do have a good reason.

Sometimes others make me feel guilty about having an invisible disease. Not all disabilities can be seen with the eyes. If I require assistance, I assure you, I need it.

I may not look sick, but trust me, I am. I don’t grimace in pain or neglect to take care of myself to gain attention. I want to smile and I want to look like everyone else. And telling me, “At least you look good,” is flattering but it doesn’t help.

It’s hard for me to ask for help, so offer a helping hand even if I don’t ask. Unfortunately, asking for help makes me feel defeated, and I don’t want to feel like I have given up. It’s OK to ask if you can help me. I won’t be offended if you offer to help me carry something or open my door.

Don’t treat me differently. I don’t want conversations to feel like those offered to mourners at a funeral. I am still alive.

Don’t make assumptions on my behalf. Would you want to be left out because someone assumed you didn’t want to do something? Again, I’m not dead.

Don’t ask me about my health if you don’t want to know. I’m an honest person and I don’t like to sugarcoat my life to make you feel better. If I get the chance to unload, I’ll take it.

I still want to feel useful. If it is within my ability, I want to help.

Please remember, there is no cure for my diseases. Although I appreciate the suggestions of alternative healing, I see a specialist. We’re working together to give me the best chance of a productive life. Don’t ask, “Are you better now?” I have a life sentence; it will be better for both of us once you accept it.

Make me laugh. Even on my worst days, I can almost forget my pain when I laugh.

Be a soft place for me to fall. I need a safe place to be at my worst.

I need friends I can trust. I don’t want drama. My life is too difficult to deal with extra stress.

Be patient with me. I’m still learning how to live with chronic diseases. I have good days, I have bad days and I have really bad days. I’m doing the best I can and I’m determined to overcome.

What I need is you. I need a friend, I need support and I need lots of love.

Follow this journey on CrossRoadTrippers.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

JOIN THE CONVERSATION

Related to Rheumatoid Arthritis

Why I See My Rheumatoid Arthritis as a Blessing Even Through the Pain

“Let’s hope it’s broken.” This strange response to my swollen hand left my mom and me confused. Granted, we were sitting in the doctor’s office of a well-respected hand surgeon. Could it be he was excited about the opportunity of doing surgery? But then why did he look so concerned? He really wanted my hand [...]

Photographer Captures Reality of His Dad’s Alzheimer’s in Striking Series

For Mark Seymour, photography is more than just a profession or passion. It helped him cope with his father’s last few years of life. When his dad, Ronnie Seymour, was diagnosed with Alzheimer’s disease five years ago, what had begun as Mark Seymour photographing his parents’ daily lives turned into a way to face and document his father’s [...]

8 Ways to Ask (and Not Ask) About Why I Look Different

A friend recently asked me, “Lisa, how do you want people to approach the fact that you look different? What exactly would you like people to do or say when they meet you and are interested in learning about your disease (scleroderma)?” I’ve gotta say, it’s a stumper! Humans are curious creatures. It’s natural and healthy [...]

When the Doctor Told Us We Would Outlive Our Daughter

There are few times in life that I can honestly say I nearly lost all faith. Faith in everything — time, logic, even God. Having no faith is like having no air in your lungs, no blood in your body, no place to go, no reason for anything, simply existing without purpose. That is what it [...]