The Hurt and Judgement That Comes Along With Saying No
One of the hardest things I’ve had to deal with since my AS began is having to say no. I don’t necessarily have an issue saying no, it’s the way people react when I do say no that is hurtful. Since this whole Covid-19 situation began, it has caused me to have to say no a lot more, which in turn has rocked some relationships.
Saying no to social events
Before Covid-19, I was having to pass on social events left and right. Birthday parties, dinners, volunteer work at the kid’s school... you name it I wasn’t there. I even missed my own son’s birthday party, which was completely devastating. I was having to forego these events because of the debilitating pain and fatigue I was experiencing. For the most part, friends and family seemed to understand. I began getting invited less often to events, and honestly, it was a relief.
Humira and being immunocompromised
I should mention that for the past 7 months, I have been treating my AS with Humira. Humira in itself is a little intimidating in that it causes your immune system to weaken. If it hadn’t changed my life so drastically, I definitely would opt-out. In a messed up sort of way, I almost wish it hadn’t worked as well as it had because of the repercussions I’m now facing.
Living in fear of Covid-19
When the craziness of Covid-19 began, I was scared. While little was known about the disease, the one thing that was repeatedly being reported was that the elderly and the immunocompromised populations were the highest at risk of experiencing major complications... even death. Knowing that I fell into this category, I quit going out in public before there were even any confirmed cases in my state. I knew it was only a matter of time, and I wasn’t going to take any chances.
My parents, who live down the road from me, and my husband and children followed suit as they knew this was detrimental to my health and wellbeing. As cases began popping up in our state, schools were shut down, and I was relieved. This was one less way to possibly be exposed.
Lifting of restrictions
As our Governor has lifted restrictions, friends and family have gone back to living the way they were prior to Covid-19 being an issue. They go to the gym, they have friends over, they go out to dinner, they ride in cars with people, some even work in close contact with strangers. My parents, husband, and kids have continued to live in a state of quarantine to ensure my safety.
It's not over
Covid-19 is not gone. Cases and deaths have doubled in my state since restrictions were lifted, which has left me more on edge than ever. What friends and family fail to understand is that although they can go back to life as they know it, this is still not a safe environment for me. I can’t have visitors, we can’t go out anywhere, and I’ve all of a sudden become a villain in all of this because I have to say no.
I feel misunderstood, uncared for, and hurt by accusations being thrown at me all because I’m trying to keep myself safe. I’m told that my points are invalid and that if I get Covid-19 I’ll “be fine.” What I’m really hearing, though, is that my feelings aren’t important and that my health is no one’s concern.
Exhausted by lack of understanding
As tensions rise, I’ve begun to feel isolated and resentful. I’m tired of feeling like I have to explain myself over and over again. No matter how many times I repeat myself, I feel like I’m still not heard. The stress has also caused my AS to start flaring up. My hips and legs ache day in and day out. I sometimes wonder if the best option for myself is to go live elsewhere until this mess is over so I'm not impeding the social life of others.
Why we actually say no
What I wish people would understand is that we don’t say no to be ugly or mean. We say no because we physically can’t or because it is an unsafe situation for us who are immunocompromised. We need more understanding, and we need to not feel pressured by friends and family who fail to understand the seriousness of the situation we are in. I hope Covid-19 dies down and we can go back to living our normal lives, but until then I hope people will begin to listen and respect the decisions we make based on our health and wellbeing.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?