Chronic illness can be quite traumatizing, especially if it is an invisible and poorly understood illness. Fighting for a diagnosis. A parade of physicians who can’t help me. Friends and family who can’t possibly understand what my life feels like now. I am terrified, and don’t know where to turn. There are not many specialists who can help me, and the waiting lists to see them can be years long. I feel absolutely miserable both physically and emotionally.
I know that sometimes it can be confusing to love someone with a chronic illness. Here’s what I want my friends and family to know.
1. Believe me. The best thing you can do for me as a person with chronic illness is believe me when I talk about the way I am feeling. For people with invisible illness — like postural orthostatic tachycardia syndrome, Ehlers-Danlos syndrome, chronic fatigue syndrome or fibromyalgia — that means you can’t see my level of suffering. When most people get sick, they have a fever, swollen glands or a runny nose that allows others to see they are not feeling well. That is not the case for people like me who are living with invisible illnesses. What does it look like if I am dizzy? Can you assess my level of fatigue without feeling it yourself? What does neuropathic pain look like to the outside observer? Please believe me when I tell you that I don’t feel good!
2. Listen to me. I need to talk to process my feelings. Let me cry. Acknowledge and accept my struggles. I may need to tell the same story several times. Talking about my experiences with chronic illness actually makes me feel better, not worse. I don’t need you to fix me. Just listen to me and allow me to express my pain and frustration.
3. Be here for me. Call me, text me or reach out in some other way regularly to reassure me you are still there. Don’t be so afraid of saying the wrong thing you stay away. Chronic illness is isolating for me.
4. Be yourself when you are with me. I still have the same interests and sense of humor I had prior to my illness. Tell jokes. Share stories from your family or workplace. Reminisce with me about the good old times.
5. Ask permission before you share my diagnosis with other people. I may not want to have conversations about my illness with casual acquaintances or in my workplace. Sometimes I want to be able to pass as healthy. My diagnosis being common knowledge at work may change the way I am able to do my job.
6. Help me to feel hopeful. If you know someone else with my illness, don’t give me the doom and gloom version of their story. Each of us is different, and just because they had a good (or bad) outcome doesn’t mean that I will, too. I need to hold onto my hope for a better future.
7. Understand that sickness does not equal sadness and healthiness does not equal happiness. People find illness depressing, so when I talk about it, they get uncomfortable. My illness doesn’t have to be sad, it’s just what’s going on in my life right now. Also, just because I’m feeling happy doesn’t mean I physically feel better. I have to make the best of my current health situation.
8. Tell me if you don’t know how to handle my illness. It’s OK to say, “I don’t know what to say.” Not everyone intuitively knows how to be there for a person with chronic illness. If you don’t know what to do, please ask! We’ll be better friends down the road if you can be honest with me now.
9. The Golden Rule doesn’t always apply. I may have very different needs than you would if you were in a similar situation. Please listen, ask me what I need and then follow my lead. Often I want and need quiet.
10. Don’t blame me for having chronic illness. Our society tends to blame people for becoming sick. Perhaps you think I didn’t exercise enough or eat well. Maybe I used to smoke or drink alcohol. Nothing that I did or didn’t do made me sick. Chronic illness can happen to anyone. Nobody deserves to feel like this.
A version of this post originally appeared on Standing Up to POTS.
We want to hear your story. Become a Mighty contributor here.