How It Feels When Someone Tells Me I'm 'In Control' of My Life With Illness


How often have you heard someone say “you are in control of your life” or “you disease doesn’t control you?” I stopped counting the many times family members, friends, strangers and fellow chronic illness warriors in our community have started conversations with these sentences. I know they want to be helpful and they say this to cheer me up.

The truth is, when somebody tells me I’m in control of my life despite my disease, I only hear three little words: You are failing! And my brain goes into a lockdown, emphasizing that if I tried harder my pain would be less painful, if I only tried harder I would have a larger social circle to go out with each weekend and ultimately, if I only tried harder my disease wouldn’t be disrupting my way of life. But this happens all the time – my disease gets in the way of social events, holidays, weekends and work, leading me to the conclusion that I’m failing at controlling it! It becomes a challenge not to get stuck in limbo and finding a way to make the thoughts stop each time I listen to or read advice on how I still control my life.

For many of us, the “you are in control” advice is like the light in a dark tunnel motivating us to keep going. Of course, the advice can be used to help us believe we can still do all the things we love despite our chronic diseases and that we are more than just our diseases. I accept this. I am not trying to criticize this way of thinking. This is especially true when it helps to move on with life.

For me, the problem is that it isn’t helpful. Two years ago, I went to a one-off counseling session at work. My initial reason for going had nothing to do with the actual conversation we had. It was two years after my diagnoses and I was still not feeling well. My doctors, friends and family members had all been telling me how I was still in control of my life and of feeling healthy again. It sounded as if all our bodies would find a way back to being healthy by default. If somebody had asked me about how I felt in those conversations, I would have said that the advice made me feel laughed at because it only stressed how I was failing or even choosing not to get better – as if anyone would choose to be sick. The counselor’s reaction was different to anything I ever experienced and it took me a while to fully understand this reply. It even took a few years to fully integrate it into my life.

I want to share the counselor’s answer in the hopes it is useful to anyone who is struggling with the “being in control” advice. He said: You are a clever woman for getting as far as this in your life. If there were a way to control your disease I have no doubt you would have found it by now. Maybe the problem is that you think all these friends and family members are correct. But what if they are wrong and it’s you who is correct? Then you would be running in the wrong direction, wouldn’t you?

I chose to accept that everyone surrounding me had no idea what life was like with my condition and that I am the one who is right. I am not in control but I can still move on and enjoy life the way it is.

We want to hear your story. Become a Mighty contributor here.

Photo via Alexey_M on Getty Images

TOPICS
JOIN THE CONVERSATION

Related to Chronic Pain

Someone holding an iPad or similar device, with a cup of coffee next to them.

Fun and Creative Apps to Try When Your Pain Is Overwhelming

On days when the storm of pain and dizziness takes over my body I try to distract myself by using these particular favorite apps: 1. Netflix Watching my favorite shows and documentaries on Netflix is a great way to spend my day whenever I am in unbearable pain and everything seems overwhelming. It’s fascinating to travel [...]
woman lying awake in bed at night

When Chronic Pain Keeps Me Up at Night

I cannot begin to count the number of times I have been told to “go to bed,” “just sleep it off” or “you’ll feel better after you sleep.” As much as I know that sleep will help with my pain and give my body a much needed boost of energy, it is more often than [...]
mirror images of a woman wearing glasses and lying on her couch

The Duality of Diagnosis: Why I Have Conflicting Feelings About Finding a 'Label'

It’s been over two years now since the sudden onset of my symptoms that included pain, fatigue, brain fog and autonomic dysfunction. At first I was scared I had a serious degenerative illness, but at the same time hopeful that the symptoms would resolve and simply go away, as my doctors assured me they would. [...]
pills spilling from container

What the Doctors on the Vox Podcast Missed When Advocating for 'Pain Acceptance'

In the wake of the opioid crisis, a recent podcast of Vox’s “The Impact” was puzzling over alternatives to opioids for chronic pain patients (“The Controversial Way Doctors Fight Pain without Opioids“). As the government and others in charge are limiting the availability of opioids, “pain acceptance” may be the future for those of us experiencing [...]