Navigating My 20's as a Newly Disabled Woman

Eventually doing dishes was becoming an increasingly painful task. I kept ignoring the pain thinking that I was weak for struggling so much with such a small task. I wanted so badly to pull my weight in my household and take some of the burden off of Keiran. When I brought this up to my doctor she looked at my hands and saw no noticeable swelling but, ordered a blood test to see if I had a Rheumatoid Arthritis marker. When my blood test came back, the marker wasn’t there however, my CRP (inflammation in my body) was on the high side. While this validated my feeling of something being wrong, it unfortunately didn’t indicate where the inflammation was coming from.

After many different tests including a MRI, Scope, Eye Exams, ECGs, X-Rays of numerous body parts, a 24-hour blood pressure monitor and regular blood tests, the only thing that remained consistent was the high CRP and no real other abnormalities. At this point, my pain was getting worse especially during flare ups and so sharp that I was struggling to hold objects and wash my hair. Walking, although possible, was becoming extremely difficult due to the pain in my ankles and toe joints. I began to lose sleep as the pain in my joints continued overnight which was only slightly dulled by numerous CBD creams and ibuprofen. I spent many different nights sobbing at the prospect of having to live with this pain forever and expressing to my partner that I simply couldn’t. 

After 2 years of tests and. advocating for myself with a great health team, I was able to be seen by a rheumatologist who diagnosed me with seronegative inflammatory arthritis. The diagnosis was written on a document for my eye doctor and probably would appear so insignificant to another person but, the moment I read it, I felt hope again.

Becoming disabled in my 20s was not something I ever expected. I cannot express how frustrating and painful it is to mourn the body and life I once had that lived and laughed without a chronic illness. As someone who has always loved to lead and have control, I have felt extremely vulnerable asking for help doing mundane tasks. While I have modified a lot of my daily activities to suit my new disabled lifestyle, there are still many things I struggle with. But, I have learned that the most important thing for my body right now is to be patient with myself as we get reintroduced to each other.

One of the major things I have had to adapt to is relying on my partner for support. We have had to modify the way we do household chores to ensure that they are accessible for myself. For me, this means very rarely washing dishes as it causes a flare up in my hands. I have also had to rely on him for heavy lifting when carrying in groceries, opening jars or drinks and help with washing my hair when I can’t do it myself. 

My partner has also been a great support for navigating disappointment due to my disability with our daughter. Being a young, newly disabled parent has been extremely hard to navigate on my own. Some times I have to miss out on activities in the sun due to my heat intolerance and also now being on NSAIDs. I cannot express how frustrating it is when I want nothing more than to show up for the people I care about but, my body is unable to allow me to. I have a tough time with the guilt of not being a “present” parent when I miss out on doing fun and adventurous things with my daughter. But, my partner and I consistently work together to try to recreate an experience and make it accessible for me. 

While this is just the beginning of what will be a life long journey, I feel very fortunate for the support I have received. Although often I still feel guilty when I’m unable to participate in outings with friends and family, I try to remind my people pleasing self that it is time to show up for myself now. I think I’ll listen to myself this time around.

By Kailey Grant