Sometimes people (even loved ones) say and/or ask me questions that, while they may seem innocent, hint at a deeper misunderstanding of what “chronic” means. These questions and comments can even make you feel as if you’re being blamed for something you have no control over.
Get Well Soon…
Such small, but powerful words – for right and wrong reasons. The sentiment behind them is fine when you have a cold or even broken a bone; colds clear up and bones heal. But when there’s no chance of becoming 100% better, hearing or reading them can really drag you down to the dark places of your mind.
The realization of knowing I’m not going to get better is one I have to face and am constantly trying to accept, but that doesn’t make it any easier to read through messages from people hoping I’ll soon be well and able to enjoy my old life again. In all honesty, to be sent messages containing the words “Get Well Soon” when you’re chronically ill, is kind of insulting as well as really upsetting which may be hard to understand. I know that the idea behind the message is sincere and comes from a good place.
For all the relief I felt when I was finally diagnosed after months of not knowing what was wrong, I then had to accept there is no cure, no effective treatment plan, and that I’m just going to have to just live with it and watch my life unravel as my illness stops me from actually living the life I want. This is an illness that I later found out, has a recovery rate of 8%. That was a devastating discovery and to then receive messages hoping I would “Get Well Soon” just added to the devastation and heartbreak.
In this way the “Get Well Soon” message can be quite harmful to mental health. It’s like a chip in the windscreen of a car, if left unfixed, it can spread across the whole screen making the car unsafe to drive. In the same way, hearing/reading the message “Get Well Soon” can make me slip back into negative thinking and can spread to feelings of hopelessness and wanting to give up. Turning those thoughts and feelings around can be difficult, but for me it’s necessary to fix the chip before it breaks the windscreen.
Refocusing on what I’m able to do on better days and not dwelling on never getting well is one of the fixes I often use to help me keep going and remain hopeful. I also find that a balance of hope and facing the reality of my situation, helps keep me positive and is the most beneficial way of thinking.
For me, “Get Well Soon” is really a healthy person’s phrase because when you look at the IC community, that phrase is never said. We all understand the impact it can have and have found better phrases to show our support for one another. Now I don’t expect any healthy person to understand, because how could they?
“Just don’t think about it”
Gee, I wish I thought of that! Everyday I attempt to fill every second of my time up with activities to distract me from the constant, nagging pain. There are a lot of hours in a day and especially now with everything that is going on, there aren’t a ton of distractions.
Even when I’m watching movies and tv shows, doing 1,000 piece puzzles, and working out, I still somehow manage to get lost in my own thoughts and often think about how I can’t get rid of the pain. I envision myself in 50 years still dealing with everything and it scares the hell out of me.
So, trying to not think about it is much easier said than done and I’m hoping that in time, I will be more at peace with everything and not have this thing consume me.
“Aren’t you healed yet?”
The shock and horror! That chronic condition you’ve struggled with for almost a year now didn’t clear up overnight!
I sometimes can’t stop the sigh escaping my lips when asked this question to whom I’ve already explained on multiple occasions what the meaning of “chronic” is. Rather than show me that you care, you’ve actually just shown me that you didn’t listen to what I was saying.
“Have you tried ___?” and “they’ll come up with a cure!”
Insert anything after “tried,” really. Homeopathy, acupuncture, standing on your head while reading the alphabet backwards. The advice usually starts out innocent enough – until you either don’t want to follow it because it doesn’t work or have tried it and it doesn’t work. Sometimes the best thing you can try to do is change the subject completely. Trust me, (yes I have talked about this in another blog post), I have researched this disease for months on end and have tried almost all remedies. I, out of everyone, know that there isn’t anything out there right now to really help me so please, PLEASE stop suggesting things. I have a doctor and a personal trainer working with me closely and that is all I want and need for now.
Also, what is equally as bad as suggesting remedies is getting my hopes up for a cure. Unfortunately, there hasn’t been a ton of research or studies on patients with IC so I find it very unlikely that they’ll find a cure in my lifetime. Rather than suggesting that I’ll one day be cured; share my story, talk about IC, make it be known – bringing awareness to this God awful disease will hopefully get the ball rolling on research. You’ll be surprised by how few people know about IC.
“But why are you still sick?”
This is usually asked (even though I’ve already been asked the previous two questions) in a “does not compute” kind of way. I guess it goes with the idea that medicine must cure once and for all, and not just relieve symptoms. It’s usually this question where I need to keep my sarcasm in check and rather point out calmly that nerve inhibitors and muscle relaxers don’t cure a scarred bladder.
THERE. IS. NO. CURE.
I am both upset and angry for the way that people talk to me. I am not going to apologize for being transparent, because every one of us, especially when we’re struggling, deserves to have the full spectrum of our emotions and experiences witnessed and heard. That makes us human.
