The Dual Experience of Having a Disability and Becoming Chronically Ill

As someone who was born with spina bifida, I don’t know the world of being able-bodied. The world of doctor visits, mobility equipment and being “different” was just something I grew up with and accepted as my normal.

It always seemed to me that there were two kinds of people with disabilities: those of us who were born that way and those who became disabled later in life, most likely from an accident or some other incident. Neither one is better or worse than the other, they simply represent different experiences. It is not an us vs. them thing.

Grieving the person we were

I remember several years ago when someone I shared social circles with even though we hadn’t officially met was injured in an accident. This person became paralyzed and is now a full-time wheelchair user. Many mutual friends came to me asking how they could help this person and how they could help her adjust. I think they were also, deep down, asking how they should adjust to their friend’s new reality.

I felt awful because I couldn’t help. I knew nothing of having your world shattered by an injury or diagnosis. I hated that I didn’t know what to say or do or what advice to give when people so desperately wanted to help.

I thought back to a book I had read by Joni Eareckson Tada that detailed her life before her diving accident and life in the years after that. I tend to recommend that book when people ask me about dealing with life-changing injuries. For one, it was a good book but to be honest, it was the only one I knew of that dealt with the subject.

The biggest thing I gleaned from that book, and what I tell people when they ask me about life after a disabling incident, is that there is a grieving process. You survive, but the life you knew is no longer there. The person you knew is no longer that person. For better or worse, someone who has their life altered in such a way must grieve the loss of who they were and the life they had.

Joining the “club”

It never occurred to me in a million years that I would need to hear that same wisdom repeated to me less than a decade later. Sure, I had to adjust to life with spina bifida but it wasn’t a grieving process for me. It was more my own form of coming into my own and learning self-acceptance. I think everyone has to do that to some degree, I just had a unique set of circumstances compared to my able-bodied peers.

That is, until about three or four years ago. I had started to feel a weariness, accompanied by my hands and arms swelling and feeling “heavy.” I quickly got worse and soon my hands were so swollen I could barely make a fist and I experienced an increasing amount of pain. I went to my PCP who immediately tested me for rheumatoid arthritis, but those tests came back negative.

Finally, after months of debilitating pain and seeing several types of doctors, I was finally able to get into a rheumatologist. Turns out, I have an “immune complex” that has manifested itself as a form of autoimmune arthritis. It’s in the same family as RA, but not the same thing. The technical diagnosis is “undifferentiated inflammatory arthritis.” That still sounds like I’m making something up to sound important! I promise you, the symptoms are very real.

Life after diagnosis

I still almost find it funny that I managed to work full-time and function fairly well with spina bifida, insulin resistance, Grave’s disease, depression, and generalized anxiety disorder. Yet, this autoimmune thing the doctor found in my gut became the final straw.

I used to work full-time and that’s no longer possible. I’m grateful for self-employment that allows me to set my own schedule and work from home. But it’s no longer anywhere close to working full-time and I have had to adjust my mindset and, to be frank, my pride surrounding that. I finally had to realize it was time to apply for SSDI benefits and it was no shock that I more than qualified.

I used to be a go-getter. No more. Now, I make decisions based on how bad it will be to recover from a single activity. I have had to go through exactly what I had described to others not so many years ago. I had to grieve the diagnosis and continue to grieve as my “new normal” continues to shift. Just as I adjust to one aspect of life with chronic illness, it feels like something new happens to restart the process.

In many ways, I count myself lucky. As someone who was already visibly “messed up” in people’s eyes, I’ve not had a single person accuse me of faking my invisible illness. It’s like the wheelchair I use because of the spina bifida gives me credibility as a person who has a real chronic illness. I also am used to the world of doctors and knowing how to self-advocate. I know how to find doctors who will listen to me and I can figure out what questions to ask.

Even though my chronic illness and disability are technically two different things, I’m finding many similarities. I’m also finding that it’s often hard to know if a symptom is because of the disability, the chronic illness, a side effect of treatment, or something new that needs to be checked out. And in my own strange way, I feel like I have some level of understanding of both “sides” of life with disability that I mentioned at the beginning. I have the big stuff I grew up with and it’s the only life I’ve known. But I now also have experience with that life-changing event that forever altered how I live and view the world around me.

Looking forward

What does this dual experience give me? I believe God is still working on that with me. I do think it’s helped me see the world through other people’s eyes a little bit and helped me better understand misconceptions and prejudices surrounding health issues. Yes, I’m including my own prejudice in that category. I think it’s also taught me to focus on what’s really important and learn it’s OK to say “no.” When you only have so much energy, you learn to prioritize pretty darn quick!

Something I keep asking myself as I write this is, “why?” Why write this article? What am I helping? Am I just using this as an outlet to complain? Perhaps I did just need a few moments to process my thoughts on paper. But I can’t help but think there are more of you out there who feel like you have to silently suffer through your grief and frustrations.

I can’t help but think I’m not alone in the world I’m finding myself in living with both a birth defect and major chronic illnesses. If this has resonated with you, even if your circumstances are different from mine, please know someone sees you. Someone out there knows a taste of what you’re grieving over. I don’t know what else to do except to choose joy, find solace in my faith, and allow myself to grieve when I need to. I can only hope my newfound experience helps shine a light in the darkness for others.