"I'm Doing Alright" - The Difficulty In Fostering Healthy Relationships
“Hey! How are you doing?”
“Oh, I’m doing alright.”
It is because I’m lying. Do they know I’m lying? Do they even care? I’m not doing alright. Not even a little. But who wants to hear that? Who wants to hear that today, every movement is painful? Who wants to hear that my medicine is making me want to hang my head over a toilet? Do they really want to know that all I really want to do is lay down and sleep for the next 5 hours? Is this kind of polite lying ok? After all, I don’t really think they really want to know the truth. They don’t really want to know my reality. Not because they don’t care, not because they aren’t concerned, but because they can’t fix it. They can’t relate. They can’t possibly understand.
This is the reality for many of us with psoriatic arthritis (PsA). I put on a mask to hide my pain, not because I want to lie to others. Not because I want to hide what is truly going on. I hide my pain to save myself, and those I love, from that awkward moment of truth. To save others from feeling what I often feel...helpless. I don’t want my friends to feel obligated to offer false hope or to try and relate to something they couldn’t possibly be expected to understand.
This is, in part, why I limit my outings. I don’t want to be the downer. I worry about how my presence makes others feel. Saying I'm fine or I'm alright usually works fine for people who are great at hiding how they feel, people who are natural pretenders. That is NOT me. If I’m thinking it, it is written all over my face. I’m a terrible liar to strangers and even worse for those that really know me. The words out of my mouth say, Oh, I’m alright but my face always gives me away-Every. Single. Time.
Why do we feel this way?
Why do we feel that we can’t be truly honest about how we feel? Before my PsA diagnosis, I was always a very positive, upbeat person. My husband even nicknamed me Rainbows and Sunshine. I worry that others will see how much I have changed. Moreover, I worry about admitting to myself that this disease has changed me. Yes, I still try to be positive, I still try and find the bright side to every situation, but there are more and more days when that is very difficult.
The truth of the matter is that the effects of living with PsA not only take their toll not only on our body, but our minds and hearts too. Our joints become twisted and painful, but so can our minds and hearts. Dealing day after day with pain and fatigue wears a person down. Waiting days and days for doctor appointments, insurance approvals, and medicines to work can try even the most patient person. Fatigue and frustration can quickly settle in our hearts, making it difficult to have meaningful and lasting relationships with friends and family.
Reason to hope
So what then? Is a PsA diagnosis the end of our social life as we know it? Are we destined to sit alone in our homes surrounded by nothing but Netflix and bottles of medicine? Nope. It doesn’t have to be that way. There is reason to hope, and that is the truth. I really believe that those who truly care about you, those who truly want to help and to understand will listen to the truth. They will not be content with the lie that you are “alright.” They will push for honesty and understanding.
There are many wonderful resources available to help family and friends understand what life is like with psoriatic arthritis. Many people have found things like The Spoon Theory very helpful in starting a conversation with loved ones. More than anything, be honest. Stop pretending. Stop avoiding. Start a conversation. You will be glad you did.
What about you? Have you lost friends and loved ones since your PsA diagnosis? Have you found honestly to be helpful in understanding and opening up the lines of communication to help heal some of the emotional damage caused by psoriatic arthritis?
Do you struggle with insomnia?