When There's No One Who Knows Exactly How Your Rare Condition Feels

Having a chronic condition like primary immunodeficiency (PI) and another condition that is yet to be diagnosed can be very isolating. There are online support groups and local events to meet others, at but no one can know exactly how I feel. Every case of PI is very different. That is why they call us zebras.

It is easy to get lost in the feeling of isolation and despair knowing that no one will ever be able to experience exactly what I go through on a daily basis. I can tell them how I am feeling, but words can only explain so much. I like to use art to try and explain how I am feeling, but once again that cannot convey everything I go through. Honestly, I don’t expect anyone to understand, but hope my support system will treat me with compassion.

It is very frustrating when I tell someone how I am feeling and they respond with, “I know how that feels.” No, you don’t, and I don’t expect you to. This is almost as bad as the “I’m sorry” response. I don’t expect people to apologize for what I am going through. When I explain what is going on in my chronic illness world, it is because I want you know. I do not expect pity for my experiences.

I have a pretty high threshold for pain. I push myself to get through the day while in pain and usually with an added infection thrown in. If I don’t show up at work it is because I am very sick, because if I called in when I didn’t feel well I would never work. I will stay in the working world for as long as physically possible because it ties me to sense of normal.

Chronic illness effects every aspect of my life whether I want it to or not. It has become a part of who I am, even though I wish it wasn’t. The world isn’t made of only rainbows and butterflies, but of loneliness and fear. Having a chronic illness is like having a rain cloud follow you everywhere you go. You never know when it is going to rain or start storming.

I find that when I have these feelings of isolation, I need to recognize that how I feel is acceptable. I am allowed to feel this way. They are my feelings and no one can take them away. I allow myself to feel this way for a set period of time and then I try to move on. It is much easier said than done! Then I look for support through the online support groups I am in and through my family and friends. Eventually that rain cloud will break open and allow some sunshine through.

Find this story helpful? Share it with someone you care about.

Related to Primary Immunodeficiency

Desperate female doctor sitting at her office

To the Urgent Care Doctor Who Rolled His Eyes When I Explained My Illness

To the healthcare professionals at urgent care, Trust me, I would much rather call and be seen by my primary care provider, or even one of the many specialists I see on a regular basis. You were not my first choice, nor my second choice. I dragged myself out of bed to visit this urgent care clinic because [...]

How a Scarf Came to Symbolize the International Movement for My Son's Rare Disease

Our son’s rare disease doesn’t have a ribbon, a 5K benefit race or even a name. That’s why while traveling the world cheering for a kid born with a rare disease, the #LukaTheLion scarf embodies the support galvanized from a passionate network of family, friends and medical providers affectionately referred to as “The Pride.” The [...]
16 things people with primary immunodeficiency wish others understood

16 Things People With Primary Immunodeficiency (PI) Wish Others Understood

This year, April 22 – 29 is World Primary Immunodeficiency (PI) Week. The Immune Deficiency Foundation has dedicated the entire month of April to PI Awareness. Having a primary immunodeficiency indicates that there is a part or parts of person’s immune system that doesn’t function as it should. Patients with PI fall sick often, and the infections can become [...]

How 'I Just Kept Running and Running' for a Cause, and You Can Too

Never in my life have I ever ran the equivalent of a half-marathon in the course of three days. Never did it previously occur to me that running could be enjoyable. Never did I feel the motivation or spirit to simply run for fun. But I guess that’s what happens when you stop thinking about what [...]