Think of your least favorite topic to talk about. Something that brings up pain, sadness, shame, confusion, and anxiety. Maybe you are in debt, your relationship just ended, your parents got divorced, etc.
Now imagine that all of your conversations start with this subject.
At work, at home, with friends — always. “Hey, how are your finances?” “So, how do you feel about your parents’ divorce today?”
It can feel like that when you have a chronic (physical or mental) illness.
I’m not saying I want people to stop asking me how I am. But it’s good to be aware that this is no longer a simple, innocent question to ask me. That it can trigger a lot of painful thoughts and emotions.
The struggle behind my answer
I grieve for the days that I could honestly and simply say “I’m good, how are you?”. Now, my head is filled with doubt and anxiety whenever someone asks me how I am:
- I assess the situation. Is this the place and time to go into detail? Am I talking to someone I can safely share more with?
- I consider my own emotional state. Can I talk about it without breaking down completely, which would cost me too much energy?
- I struggle even knowing how I am. I have been sick for so long that it can be hard to tell if I’m getting better, or worse, or staying the same.
- I feel pressure to make the my invisible illness visible. To help people better understand what I’m going through. And to make it clear that I may look fine, and I may even seem functional and active, but I am still sick.
- I feel like I’m constantly crushing your hopes that I might finally be feeling better.
And that is how every conversation starts — with a storm of thoughts about the most negative, painful thing in my life.
It is one of the reasons that I thought it would be impossible not to focus so much of my attention on my illness — the subject of my first blog post.
Letting go of the giant dog
The metaphor of my first blog post grew out of a conversation with my psychologist, in which we pictured my illness as a giant, uncontrollable dog that I had to walk. She asked me to come up with different ways to walk the dog.
She kept asking for more possibilities, even after I had run out of ideas.
“What about if you just let the dog walk itself?” she suggested.
That was when I realised that I had not thought of any scenarios where the dog was not my focus.
At first, I got really frustrated. She didn’t understand that with every step I take, I feel the weakness of my aching muscles. That I see everything through a foggy haze that creates distance between myself and my surroundings.
That every conversation I have starts out with someone asking how I am, reminding me that I feel sick, that everything relating to my health is uncertain, and that I am not in control.
But perhaps it doesn’t have to be that way.
Grasping at straws
Often when people ask me how I am, I feel like I need to be able to tell them not just how I feel, but why I might still be feeling so sick and when I might be feeling better. In other words, I make myself responsible for knowing what my illness is doing at any given moment as well as being able to predict the future.
But I can’t know these things. Even at the most simple level: if I feel slightly better or worse, I don’t know if it is because of something I did (let alone what it was) or simply the illness changing course.
Trying to analyse this can be exhausting.
So why do I do this? I’m trying to explain it to be able to make sense of it. To try to grasp what is happening to me. But in the end, I can only theorize and it doesn’t make me feel better or more in control.
Staying in the present
What if I try to be reflective and accepting of how I feel physically and mentally, without constantly trying to place everything into the scope of my illness?
To answer the “how are yous” by focusing on how I feel in this moment, rather than also trying to figure out what my illness is doing, how it is affecting me, and where it might be going next.
To let go of constantly trying to get a grasp on something that I cannot understand and cannot control.
Trying a different approach
I cannot (and don’t want to) stop people from asking me how I am. But for my own sanity I am going to try to make it a less stressful occurrence by trying the following strategies:
- Stick to how I feel in this moment.
- Do not go into why I might be feeling this way, what my illness might be up to, and whether I am doing too much (or too little).
- Accept that “I don’t know” is also an answer. Especially if people ask me questions that require me to analyse or predict.
- Be honest, but don’t feel that I have to go into detail all the time.
- Prepare an answer beforehand if I feel particularly anxious.
- If it feels strange to just say “I’m not okay” or “I’m really exhausted”, continue by talking about something I’m trying out. E.g. “I’m really exhausted, but I’m experimenting with being a little more active to see how I handle it”.
Please keep asking me how I am. But please be aware that it takes a toll on me to have to keep giving you a negative answer. And that your (and my) expectations for what I can know about how I am doing may not be realistic.
I want nothing more than to say “I’m good” and be able to mean it.
For now, I’m not okay. I don’t know when I will be okay again. I hope soon. But I am doing the best I can to cope under the circumstances. And much of the time, I succeed in being okay with that.
I hope you can too.
