Coping With Others’ Judgments and Emerging as We Are
We recently moved into a new community. We've been in our new home for over a year now. Through healing, there's an urge to connect with family, friends, and with those around me in the community. As I begin to emerge from what I consider a life-altering chronic illness, I realize I've changed a bit. With current affairs as they are, I've come to realize times have changed as well. And I have so many questions.
Why is it so difficult to take the time to have a meaningful conversation with a neighbor? What is this aggression I feel around me? Is it really that hard to produce a smile for a person walking down the street? Where did we lose courtesy, understanding, and friendliness? Is it that difficult to close your mouth if there is nothing nice to say? Emerging from the dark, I've come to realize I may be more isolated than I thought, and it hurts.
Some days are good, some bad as I manage my invisible illnesses
It can be quite isolating and lonely, even when there are people around me. Suffering from chronic illness(es) not only sets you apart, but it also makes navigating life quite a bit harder. In many instances, people just don’t want to address what you are going through. They avoid the topic, fail to comprehend, or invalidate your illness. At times there is no interest at all. As well, people can be quite judgmental, leaving a gut-punch feeling in you that is terribly hard to recover from.
Isolating and losing friends
For me diagnosis of spondyloarthritis was a horrible shock; it took over my world. I began to isolate. I quit my job. I lost many friends, some because they didn’t want to amend their fast-paced world around a cripple. Others I willfully pushed away. I resorted to being housebound mostly because I felt terrible, other times to avoid uneasy questions or sympathy-laden gestures. I even began to isolate more and more from family members during debilitating periods. It's been a grueling and toilsome time; such a demoralizing period for me. And so, I hid.
Finding some solutions
But since beginning my 5th biologic medication and having a few major surgeries, I've begun to heal and improve in a few different ways. Though degeneration of joints continues to plague me, overall I've seen a change for the better. I feel healthier than I have been in the last few years.
I am getting to a point where pain and debility are considerably less. I have an interest in things again. I'm even thinking about starting a movement practice in the morning, where prior there was no way I was bending down to touch my toes, let alone get in a "down-dog" position.
Since peaking out from under my dark cloak of security, I've begun to venture out. A few times I'll add. I've traveled to the grocery store, had some visits at doctors' offices, and other times enjoyed a family celebration or 2. Overall, emerging has been a positive experience. But there have been moments that have been questionable, wondering if I should have just stayed hidden away. The judgment, criticism, and irrational behavior that seems to have taken over in the community weighs heavily on me.
Things feel turbulent and aggressive
What has become of people and their "filters?" Is it now okay to demean someone in public? Why do people think it's okay to be rude to another? Can we just tone down the aggression? It could be the sign of the times turbulent as it is. But where has understanding and caring gone? Where is the consideration for one another been tossed to? Without answers I know I will revert to isolation. I tell myself I do this for more time to "recover" but I know better.
People stare at me when I use my cane
A few issues recently have been blatant. I've been targeted for a few reasons. As I said, I have good and bad days. When I use my cane, it's not to get sympathy. I use it as support so my leg doesn’t give out under me on difficult days. When pelvis pain becomes too much, my cane is a true and trusted companion. Please stop staring. And yes, I walk slower with my cane so please pass me by if you must. I will go at my own pace, thank you. I will not rush for you anymore.
People also ask rude questions
There are also times individuals question my condition. "You're too young to have inflammatory arthritis", "Are you sure? Did you get a second opinion?" or "How is it you walk with a cane? You look way too young to be limping." This denial or lack of knowledge about chronic illness, although well-intentioned, is terribly frustrating. Yes, I have spondyloarthritis. Yes, I have days I need my cane. I want to scream in their faces that chronic illness takes place at any given age, but it will be fruitless and a waste of time explaining. I've changed in the fact that I just don't want to explain anymore.
And they don't believe that my handicap license is mine
Another tiresome situation is that not one person who sees me exit my car believes I am the reason I have a permanent handicap parking license plate. I've had it for at least 5 years and I still receive looks, am riddled with nasty comments from passersby about driving my “mother's” car and abusing the parking privilege, or downright asked to move my car. When people are all up in my business, frustration and anger builds resulting in me losing patience and peace of mind. Please just move about your day.
Assuming I will overcome this illness and eventually get better is the worst of it all
I hear, "get better soon," "I certainly hope you recover sooner than later," or "Before you know it you'll be back to your old self." Please know, I will always have to manage spondyloarthritis...it is not a virus or an infection. It is an autoimmune condition that affects my whole body - the spine, enthesitis, eyes, heart, lungs, limbs, tendons, et cetera. And it hurts when not controlled well.
I am going to need to control my symptoms until I go into remission, or I pass away. This is a life-long condition that has a way of wearing down and debilitating an individual. It's not a cold that gets better in a week or 2.
It feels incredibly challenging to maintain a sense of connection in today's environment. As much as I emerged feeling a need to connect with those around me, it has been hard. Have I mentioned it's been lonely? When will people begin to understand our condition isn't something you can cure? It is an illness we treat, good days, bad days. We feel like we are on a roller coaster, with very little control. I hope that just because others in the community fail to understand or comprehend what a life with chronic illness looks like, it does not deter you from living your life. Emerge. Get out from under the mantle of security and move about in the community. Life is about living.
Join the conversation