July is Disability Pride Month and I would be remiss if I didn’t spend a bit talking about my life with chronic illness. Chronic illness plays a large role in my life and my story. Believe it or not I have 6 different chronic conditions. I started navigating this journey when I was 15 years old, so pretty much 1/2 of my life. They definitely impact how I feel and how I view myself. These are intertangled with and exacerbated by the narcissistic abuse that I was subjected to.
What is Chronic Illness?
A chronic illness at its most basic definition is a condition that does not have a cure. These types of conditions are very difficult for most people to understand. Why?
- People with these conditions are not just going to get better. This is not pessimism. It is just a fact, they are lifelong conditions. This does not mean that they can’t go into remission (but the condition will still live within that person and can come back at any time).
- People with these conditions will have days that are more symptomatic than other days. Days without many symptoms do not mean they are cured. It is just a better day.
- People with these conditions may have days where they can certain things and days where they can’t do those same things.
- People with these conditions are not just lazy. In fact they are expected to do the same amount of work as a healthy person on top of managing appointments with a team of 10+++ doctors, specialists, therapists, and medical professionals in a body that isn’t made to handle it.
My Conditions
I have mentioned that I have several chronic illnesses. I specifically want to highlight three of them that affect me the most.
CRPS (Complex Regional Pain Syndrome)
This is the first condition that I was diagnosed with at the age of 15. I played softball at my high school. While playing I was hit by a softball going about 80 mph on my hand. This broke my hand in two places. Which you would think would be pretty simple. It would heal and I would move on playing. Wrong! I never played softball again. Instead my hands started swelling and the pain was worse once my bones healed. My nerves became overactive. They were sending constant pain signals even when they were not needed. This was read in my brain as constant pain and it spread throughout my whole body. This condition is rated as the most painful condition. My symptoms include:
- High levels of pain
- Swollen hands/feet
- Discolored hands/feet (red/purple)
- Sensitivity to temperatures (things feel extremely hot or extremely cold)
- Sensitivity to touch (something as soft as a feather touching my hand can feel like a knife)
- Muscle Atrophy in the affected limbs
- Etc.
FND (Functional Neurological Disorder)
I was diagnosed with this condition last year in 2023, after struggling for about a year with mysterious symptoms. I woke up one day and my legs seemed paralyzed. It was impossible to move them using my brain. My brain was not capable of sending signals to my legs. I had needed to relearn walking before due to my CRPS, but that was due to pain. This wasn’t painful, I just couldn’t move.
This condition is a chronic illness affecting your nervous system (the connections your brain makes with your body). This can affect people in different ways (for me, it was my legs). I used a wheelchair and other assistive devices to move around for almost two years. I have gotten to where I have retaught my brain how to connect with my legs through a lot of physical therapy work. However, I still have this condition. It can still pop up in the same way later in life or in a different way.
Gastroparesis
The most basic definition of this condition is having a paralyzed stomach. This means that my stomach and digestive track does not process food at the speed it should. It is too slow. This can cause a lot of issues.
- Lack of appetite
- Vomiting/Diarrhea
- Bloating
- Nausea
- Weight Loss
- Stomach/Side/Back Pain
Most of these things result in not being able to eat/drink enough. Which are two things that are essential for living life, especially as a young and active person. This has caused me problems with:
- Dehydration
- Headaches
- Dizziness
- Fatigue
Handling Chronic Illness Diagnoses
Chronic illness is a hard thing to accept. You want to just get better. You don’t realize how much of your old life that you grieve losing. It is challenging having to accept that you can’t do things the same way that you used to. Heck, I am 29 years old and most of my appointments are in offices with people who are not below the age of 70. They and my doctors often think I am too young to have these problems. That I am a complicated medical mystery. Many of whom think its all in my head or just anxiety (its not, although a lot of stress can make it flare worse).
The biggest thing that I have learned and am still learning is to take things one day at a time and sometimes one moment at a time. I have to slow down some to give my body a chance to catch up to my brain. My body needs to get rest and I have to make conscious decisions to avoid doing too many things by prioritizing things. I often prioritize work. If I can make it through work, then I can do other things. I have to rest and take my time to ensure that I can work to my full potential. I am hoping to find a better balance to where I can enjoy more things and not be owned by just work and my body recovery.
Just because we have chronic illness doesn’t mean that we should not get to enjoy life! We may need to adapt, but we can find ways to do the things that matter the most to us.
