What I Want You to Know about My Life with Invisible Illness

I want you to know that chronic illness is traumatizing for me. I am terrified, and don’t know where to turn. There are not many specialists who treat my condition, and the waiting lists can be years long. My quality of life is often poor - people with postural orthostatic tachycardia syndrome have about the same level of disability as someone with chronic obstructive pulmonary disorder (COPD) or heart failure. Many invisible illnesses may not be fatal, but there is also no cure. I feel absolutely miserable all of the time and my body won’t allow me to do the things that I want to do.  Please be patient with me, and know that I am doing the best I can to deal with my illness.

What I Need from YouFamily

Believe me. The BEST thing you can do for a person with chronic illness is BELIEVE THEM when they talk about their symptoms or the way they are feeling. POTS is an invisible illness – that means that you can’t look and see my level of suffering. When most people get sick, they have a fever, swollen glands, or runny nose that allows others to see that 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!

Listen to me. I need to talk to process my feelings. Let me cry. Acknowledge and accept my suffering. Think about me. I may need to tell the same story several times, please just listen. Talking about my experiences with chronic illness actually makes me feel better, not worse.  I don’t want to hear about other chronically ill people that you know, or what you know about my disorder. I don’t need you to fix me. Please don’t give me advice on how to handle my illness. Just listen to me and allow me to express my pain and frustration.

I need to know that you are here for me. Call me, text me, or reach out in some other way regularly to reassure me that you are still there. Don’t be so afraid of saying the wrong thing that you stay away. I’ll forgive you if I know that you sincerely care about me. Chronic illness is isolating.

Be yourself when you are with me. I still have the same interests and sense of humor that I had prior to getting sick. Talk to me about more than my illness. Tell jokes. Share stories from your family or workplace. Reminisce with me about the good old times. It’s okay to say, “I don’t know what to say.” The truth is that I don’t always like to be asked about my illness. I want you to be honest with me.

Actions speak louder than words. Be genuine in your concern for me. It’s not so much what you say, but the feeling that accompanies your words or actions. When you say you’re going to do something for me, follow through quickly.

Ask permission before you share my diagnosis with other people. I may not want to have conversations about my illness with casual acquaintances. Sometimes I want to be able to pass as healthy. My diagnosis being common knowledge at work may change the way that I am able to do my job.

I need to feel hopeful. I like to hear success stories, not horror stories. If you know someone else with my illness, don’t give me the doom and gloom version. I need to hold onto my hope for a better future. Often, telling me about other people with my illness does not comfort me. Each of us is different, and just because they had a good (or bad) outcome doesn’t mean that I will, too.

Sickness does not equal sadness and healthiness does not equal happiness. People find illness depressing, so when I talk about it, they get uncomfortable or take it as complaining. My illness doesn't have to be sad to talk about, 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.

I like it when you express confidence in my ability to make the right decision about my health. I need to feel like you respect my treatment decisions regardless of what I choose.

Sometimes I need you to be sensitive to my needs, but don’t let me know it. Don’t assume that I can ask you for help. Sometimes I need you to ask what I need – physically and emotionally – to deal with my illness. But ask, don’t just show up when I may not have the energy to spend time with you.

What Makes my Life Harder

Answering the question “How are you?” can be difficult. Do I lie and pass for healthy? Do I tell you the truth? Do you really want to know, or was the question more of a formality? Changing the question to “How are you today?” lets me know that you really want to know how I am feeling right now.

I want comfort, not advice. Please don’t tell me about an article that you read on some magic new cure – your advice confuses and scares me when it differs from my plan. Please don’t push your beliefs onto me.

I want compassion, not pity. Pity comes from thinking that you are somehow better than I am. Instead, show me compassion from the depths of your soul. Share my pain with me as I tell you my story.

The Golden Rule doesn’t always apply. I may have very different needs than you would if you are in a similar situation. It is important to listen, ask what I need, and then follow my lead. Often I want and need quiet.

I don’t want to be blamed for having chronic illness. In our society, we tend to blame people for becoming sick. I didn’t exercise enough or eat well. I used to smoke or drink alcohol. People do this as a defense mechanism to make themselves feel safer. I didn't get sick because I am a bad person. This could happen to anyone.  Maybe even you.  Nobody deserves to feel like this. Blaming me for my illness makes me feel alone and adds isolation to my life.

Telling me to think positively can make me feel worse. When you tell me that I’m going to be fine, I don’t believe you. You can’t possibly understand what it feels like if you don’t have a chronic illness, and not everyone can get control of their symptoms.  

If you can’t handle my illness, tell me instead of just disappearing.  Not everyone can handle being there for a person with chronic illness.  If you don’t know what to do to help me, please ask! We’ll be better friends down the road if you can be honest with me now.