5 ways I try to cope more mindfully with chronic illness and its impact on my mental health
Written by guest writer Susan P.
Life changes when you’re ill.
You know that feeling you have when you have the flu? When you are stuck in bed with a mountain of tissues, a pack of paracetamol, and a hot cup of chamomile tea and all you can think about is how much you will appreciate it when you are not sick anymore?
You pretty much know that while the next week or so may really suck, you will get better and go back to your normal life. That first good night’s sleep, that first workout, that first social event where you are not frantically reaching for tissues every time you feel your nose itch – it feels amazing. Pretty quickly, you forget you were ever sick and healthy goes back to being the norm.
But what if you had no idea when (or whether) that appreciative moment would come?
When I was diagnosed with an autoimmune disease in early 2016, I didn’t stop to consider the mental impact of not having a timeline for when I would feel healthy again. I also didn’t expect that I would be struggling for years with a body that just would not get better.
With a bit of luck, my illness is supposed to be treatable to the point of being relatively symptomless. That has not been my experience so far. In the worst periods, everything in my body went into overdrive, including my heart rate. I couldn’t sleep, but I could also barely get out of bed. Even in the better periods, I felt some degree of exhaustion and weakness. I can count on one hand the number of moments in the past three years that I actually felt awake and energized.
Coping is harder than you’d think.
For the first year of being sick, I thought I was coping quite well. I didn’t dwell on my illness or share much about it with the people around me. I refused to let it hold me back, so I continued working a full-time job. Since I expected the illness to be a short-term obstacle, I thought I could power through and make it to the other end unscathed. I really enjoyed my work, but in hindsight I see that I was pushing my body harder than I should have been.
As time went on, the continued unexpected setbacks in my treatment became increasingly difficult to get over. The impact of being sick for so long was beginning to wear me down. The lack of control, the uncertainty, the lack of energy – it was gnawing at my mind. My head felt cluttered and heavy.
“How are you?”. It seems like such an innocent question. For me, however, it was enough to cause my stomach to churn and a lump to form in my throat. Most of the time I didn’t really know how I was because I tried my best not to think about it. Acknowledging how terrible I actually felt made me feel lost. In dark moments, I couldn’t imagine ever feeling healthy again. I also couldn’t imagine a truly fulfilling life in my sick body.
After nearly two years of being sick, I finally saw a psychologist. She helped me accept the fact that feelings of depression and anxiety were not a surprising outcome of my situation. Besides the fact that my illness itself has psychological symptoms, being sick for such an extended period of time is bound to affect you mentally. I still find it shocking that my doctors never discussed this with me.
After working with various mental health professionals, I have learned a lot about myself and how to better cope with my challenging situation.
Here are five ways in which I am learning to deal with chronic illness and its psychological impact in a kinder and more mindful way:
I am more open about what I am going through.
For years, I hid my illness and the extent that it affected me from most people. Talking about it was always difficult for me. It brought up a lot of overwhelming emotions. However, by not talking about it I was bottling all these emotions up. Eventually, they started to spill out in the form of panic attacks.Earlier this year, a relapse in my illness caused me to go on sick leave for five months (and counting). Finally, I had to face the fact that my life as I had been living it was unsustainable.
Completely dropping off the grid forced me to open up about my situation. While this was scary, I have already noticed that it saves me energy and mental turmoil not ‘keeping up appearances’. I try to be more open about how I am feeling and the mental and physical toll that being sick has taken. I still don’t like to talk about it, though, so it remains a struggle. But I have come to realize that while most people cannot personally relate, their empathy brings a feeling of support that I deprived myself of before.
I am more reflective and assertive.
These two qualities really go hand in hand for me. Practicing self-reflection allows me to take time to think about how I am feeling, what I can handle, and what I enjoy. Trying to be more assertive then allows me to set boundaries in what goes on my plate and what is left off. At the same time, I try to use the insights gained from reflecting on how I am doing to communicate better with my doctors. I’ve had to learn to advocate for myself to get the best medical care – so that doctors do not only follow the results of my medical tests but work to get me feeling as good as possible.
I have become a more active participant in my treatment plan in this way. It remains a very difficult and delicate balance of being a little bit active and finding joy each day, while not overexerting myself, but also not isolating myself too much. I often feel as if even the smallest decisions – for example, whether or not to have a friend over – can have huge consequences for my recovery. I’m still working on not overthinking these decisions, not blaming myself, and letting go of mistakes that I make that might negatively affect my health.
I am more responsive to my body’s signals.
When I was diagnosed, it was clear that I had been sick for a long time before going to see a doctor. Everyone’s first response was “How could you not have noticed that you were so sick?” accompanied by a surprised and concerned look. I can’t really blame them – I thought it too. Over the past years, I often felt like my body was letting me down and holding me back from truly living. However, I have become aware that I tend to ignore my body’s signs of overexertion when they are inconvenient (which, of course, they usually are). Now, I am trying to listen to my body’s signals to slow down. And, instead of resenting my body for tiring quickly, I try to be thankful for understanding it a little better. I try to trust that my body is doing its best to recover.
I am more organized and proactive about my health.
Recently, I started a journal to keep track of my medical appointments and treatments. It allows me to prepare questions, write down insights and advice, and reflect on my progress. I also use it to track my symptoms and triggers. I have been treated by so many different doctors (not helped by the fact that I moved cities recently) that I am the only one who has the full picture. This journal also helps me to safeguard the link between my autoimmune and psychological treatment. Sometimes it feels like a full-time job all on its own. I have to remain very mindful not to overanalyze every symptom and worry about every appointment.
I am trying to focus on the present to cultivate a sense of control.
The unpredictability of my illness causes me a lot of stress. It makes me feel like I have no control over my health and my future. Quite often, I have felt like I cannot handle another setback. Being patient in the face of an uncertain timeline for my recovery is one of my main challenges. I often feel stuck while the world is moving past me. In thinking this way, I make myself small and passive. However, when I reflect on the number of setbacks I have endured so far, I cannot help but feel proud of myself.Rather than worrying about all of the factors that are outside of my control, I am working on focusing on the things that I can do to put my body in the best possible situation to recover.
This includes taking my medication, having a regular and healthy rhythm of sleeping and eating, and reaching out for help when I need it. Most importantly, I have to try to accept that even when circumstances are perfect and I am able to maintain healthy habits, I may not recover at the pace that I want. I am working on accepting the uncertainty and letting go of the self-imposed pressure to get better faster. I try to stay in the present, focusing on enjoying the positive aspects of the life I have right now. I haven’t fully gotten a grasp on this yet – but I’m working on it.
“It’s a challenge to mindfully walk that middle path between being proactive about your health – always trying to improve it – but at the same time, accepting the way you are so that you can make the best of each day”
I try to live by these lessons every day. Most days it is still a struggle. But I have gotten stronger and try to celebrate the little victories in my ongoing recovery. Writing this blog – which has helped me recognize the progress I have made but is also terrifying – is one such victory.
 Toni Bernhard (2015), How to Live Well with Chronic Pain and Illness, p. 325