In my mind and experience, immune thrombocytopenia (ITP) is such a strange autoimmune disease.  It occurs within my body, and I have no idea what is going on or when it’s happening.  Sure, the longer I had ITP, the more physical signs I could look for: petechiae, bleeding gums, extensive bruising, etc.  But, for the most part, ITP is considered an invisible illness, like many other autoimmune diseases. 

With ITP, you cannot physically see that your body is attacking itself.  You cannot physically see that your platelets are decreasing or low. You may have the worst fatigue ever, but you have no real confirmation until you get a complete blood count (CBC) test. You must go to the lab, draw blood and wait for the results. I’m fortunate that my hematologist has an open order for me so that anytime I’m feeling off or like something isn’t right, I can just go in and get my CBC, but not every hematologist works this way.  

Read more about therapies for ITP

One of my biggest struggles since being diagnosed with ITP is the fact that I physically appear fine. If you were to look at me, you’d have no idea that my body was going through mass destruction. Sure, some days, the fatigue would make me look exhausted, but other than that, nobody around me ever knew when I was struggling.  

I often would hear things like, “But you look fine” or “You look great,” all the while, I was usually feeling far from fine or great. The hardship of this is a lot of people don’t understand or think that you’re actually sick because they physically can’t see my ITP. Even the people that know I have a blood disease can’t understand because I don’t look “sick.”  

This can be even harder in the workplace, social settings, and even with other doctors.  Especially because I’ve gotten really good at acting “fine.” It’s in my nature to just keep going until I can’t anymore. So when people see me one day and then find out I’m in the hospital the next, they just can’t understand. To be fair, I don’t always understand either. But with every hospital stay, every relapse, every setback . . . someone will inevitably say those dreaded words, “But she didn’t/doesn’t look sick.”  

It used to bother me. Here I was, fighting this invisible rare blood disease that terrified me, and people just didn’t get it. They didn’t realize the severity of the disease. So after a while, I tried to take moments like this as teachable moments. First and foremost, educating those around me, to the best of my ability, about what this disease really is. Just because you cannot see it does not mean it’s not real, and does not mean that I’m not struggling.  

We’re human, most people don’t like to have hard conversations, and I do understand that many people just don’t know what to say to someone who is chronically ill. So, I put together a few retorts I wouldn’t mind hearing: 

Instead of “You don’t look sick,” try “That must be frustrating. What can I do to support you?”

Instead of “Have you tried yoga or going gluten-free,” try “What helps you feel better?”

Instead of “I know how you feel,” try “You’re not alone, and I’m here if you want to talk.”

Instead of “You’re so brave,” try saying nothing at all and just listen.

It can be hard to know what a person with an invisible illness is going through, and it can be difficult to know what to say.  If you take anything away from this, offer support, a listening ear.