This month in the community interview we talk to Emma (she/her) who lives in Florida about her two conditions and how she uses the terms chronically ill and physical disability/invisible disability. She also speaks about learning to accept a changing body abilities.

Hello Emma! It is great to talk with you today. Could you please tell us a little about yourself?

I live in Florida. Do you have a favourite hobby? Going to theme parks when I’m up to it and reading. 

I work as a Kindergarten-2nd grade resource teacher working with students with exceptionalities. I teach their General Education academics as well as make sure that their accommodation needs due to their exceptionalities are met. 

Do you have a diagnosis for your symptoms?

I have 2 different conditions: 

Neutropenia which is an autoimmune disease in which my blood cannot produce enough of the correct components to fight off infections. For this condition I use the term chronically ill. Neutropenia is a blood disorder. My white blood cells cannot produce a component called neutrophils correctly sometimes. So I’m more prone to catching any sickness and have a harder time fighting off any sickness. Usually neutropenia is a side effect of other diseases such as cancer treatments. I however have a form called cyclic neutropenia where it is in my genetic code and therefore permanent. I have my blood checked every week and have to get a booster shot if my levels are too low to fight off any sickness I might catch. 

I also got diagnosed with ankylosing spondylitis 2 years ago. This condition is a form of arthritis that affects all my major joints, specifically the joints around my spine. For this condition I use the terms physical disability and invisible disability.  

How long did it take for you to get a diagnosis? Does having a diagnosis help you? 

My neutropenia took years and a bone marrow biopsy to diagnose. It does help to have this diagnosis as my specialist for this is one of my favorite doctors. Knowing my diagnosis gets me the right treatment and helps me to know what precautions I need to take in my life to help. 

My ankylosing was diagnosed in under a year. It did take some extra tests as to begin with the doctors thought it was a more common form of arthritis such as rheumatoid. This diagnosis does help as I know why my body, specifically my joints, have the issues they do and that it is not due to any lifestyle issue of my own. 

When did you first realize that you had chronic illness and how has your journey been since then?

My doctors first realized I had an immune problem in high school but I didn’t get properly diagnosed until after college. I was diagnosed with arthritis in my 30s. Having both diagnoses help explain a lot of issues I’ve had since I was younger and help me to understand what I need to do to take care of myself better. 

How has your experiences of the world changed since your symptoms started?

I definitely have had to view my world differently. I’m very independent and was really active in sports and dance when I was younger. Acknowledging the differences in how my body reacts now and that I might not be able to do certain activities I used to, or at least not to the ability level I used to be able to, took a lot for me to accept. I also view others differently. Having an invisible disability myself I always try to acknowledge that every person might be going through something you can’t see and give everyone grace in my interactions with them. 

Which of your symptoms do you find the most debilitating and why?

Thankfully I have not had too much of an issue with my neutropenia yet. However my arthritis can cause me to have really difficult days with movement and pain.

Can you describe what a bad day symptom-wise looks like to you?

With my arthritis, a bad day can be having to take extra long to force myself out of bed with aching joints. Extra medication, ice and heat on my joints, and extra precautions throughout the entire day. I really have to focus on my body and know my limitations so that I do not cause a worse flare up where I won’t be able to function that day or the next. 

When you have a good symptom day, what do you like to do?

On a good symptom day I love to just do normal activities. I love going to the theme parks with my friends and not having to be the person always telling them I need to rest or need a break. I do still have to be cautious on good days though, since if I overdo it, it could lead to a flare up the next day. 

What has been the most helpful for you as you have gone through this journey?

Probably being honest with myself and others about my conditions. Since I look healthy and don’t currently use any mobility devices to help me yet, it can be hard for others to understand that I do have a condition that can make it difficult for me to do things others can at my age. Usually once I explain however the interactions become much more positive and accepting. As someone who has social anxiety issues as well being able to advocate for myself has been a huge process but has really made an impact in my interactions with others. 

Thank you Emma!