Being diagnosed with a chronic condition or conditions is stressful. You will notice part of my coping mechanism is I don’t use the word disease. I talk about conditions. I’ve learnt to accept I have a condition, I’m not ready to use the word disease. I’m in my third year post-diagnosis and I’m still adjusting.
Finding out you are not well is a difficult time. So many questions:
- What does my future hold?
- How bad might it get?
- Will I become a burden on my family?
- Will I be able to do my job?
- How fast does this condition progress?
- Will this shorten my life expectancy?
These are just a few of the many, many questions that will run through your mind. Worrying about the answers is, yes, you guessed it, stressful. The answers will ultimately be different for different people. I met a fellow patient in the gym one day. Diagnosed with rheumatoid arthritis in his late thirties, he was forced to give up work in his early forties. He is now in his early sixties. He is still doing everything he can to stay as well as possible – I met him as we worked on adjacent rowing machines. He told me he has had several operations over the years and lack of energy/fatigue is one of his major health issues.
I was diagnosed in late 2014, I am still working, swimming, walking, lifting weights: I am careful about how much I do, but my life has not, yet at least, been affected as dramatically as his life has been. I’m in a much better state of health now than I was in 2014: hopefully I can continue to improve or at least stay as healthy as I am.
I compare the two cases to illustrate in those early days there are no immediate answers. Any of us can be at either extreme or anywhere in between. I worked with a young woman who was having her first baby. She told me in her very early twenties, shortly after she was diagnosed, she could not hold a toothbrush or do up her bra. Yet here she was some years later working full-time and about to have her first child. Try not to worry about the unknown: easier said than done, I know. It took me quite some time to stop worrying about what I could not control.
Your doctor may well have said to you something along the lines of “Get the stress out of your life”. Great – you just gave me more stress and you are telling me to get stress out of my life? Terrific!
We all live with a degree of stress in our lives. Making sure we get to work on time, pick the kids up from school, stretch the budget until next pay day, find the money to fix the water heater than just blew up a week out of warranty, dealing with the daily commute, an upsetting disagreement with a partner, difficult challenges at work. In modern life we have so much packed into 24 hours, many of us don’t get enough sleep which in turn doesn’t help our health or our ability to deal with stress.
There are major stressors: the death of a loved one, changing jobs, moving house, divorce. The Holmes-Rahe Stress Inventory allocates points to many life events. They also developed a statistical predictive model, predicting the probability of a subsequent adverse health event based on a person’s stress score.
In 2012 the Carnegie Mellon University released study findings: How stress influences disease: Study reveals inflammation as the culprit. Then there is Stress as a trigger of autoimmune disease, a study looking at the relationship between stress and autoimmune conditions. This is just three of the many, many studies that have been done.
Stress may also lead to condition flares: all of a sudden the condition will go crazy bad for no apparent reason. As an example, one day I woke up unable to use my right arm, the pain in my wrist and hand was excruciating. I spent the day with my hand in the comfort position (think of an arm in a sling, hand higher than elbow). By 3 pm in the afternoon that flare had faded. Luckily. It may not have been stress that caused that particular flare, I will never know for certain, but I suspect it may well have. We are well advised to minimise stress.
What can we, as patients, do to reduce stress? Re-evaluating what is important to us is a good place to start. If we have a big home with a massive garden, we need to consider do we really need that. Is hiring a gardener and a housekeeper feasible? Can we delegate tasks to other family members? While every person is different, I can spend an hour in the gym lifting weights with no pain at all, yet I end up in pain every time I change the linen on the bed. If I spent an hour in a garden on my knees pulling weeds I’d be in serious trouble afterwards. If we hold onto that garden or the house, we then stress over the things we can’t, or shouldn’t, be doing. By the way, there is nothing wrong with vacuuming one room a day if that is what we need to do – it can be as simple as ensuring we pace ourselves. I discuss pacing in “Pacing for Beginners“. Consider downsizing (not possible for everyone, of course). Adjust how you do things – I leave some thoughts at the end of this article.
Work may be another challenge. Depending on the hours worked, the type of job and the specific symptoms any individual experiences it may be worth reconsidering how we earn our daily bread. Making that decision can be stressful in itself: there are possibly financial implications and certainly psychological implications. We may have to fight feelings of inadequacy or incompetence because we can’t work the hours we used to or do the tasks we used to do.
Fatigue is one symptom that isn’t always given a lot of attention, yet can be extremely disruptive to our lives. It is also a symptom I have struggled with during the last four years. The feeling of uselessness was at times overwhelming. I went from being a person who did everything at “100 miles an hour” (according to a girlfriend, that is) to someone who has learnt if I go at 100 miles an hour today, I’ll be useless tomorrow. Adjusting to this new way of living and working can be stressful. We want to be just the way we were before. We can slip into old ways of being and then pay the price the next day – or for two or more days. Be kind to yourself: easier said than done for many of us.
We may also feel physically inadequate or incompetent (there it is again) compared to our past selves. The first time I tried to do a leg press again I found I had to start at 20% of what I had been able to do in my heyday. To me that was devastating. I felt like I was a shadow of my former self. Who was I now?
Brain fog. Yes, folks, brain fog is real. Very real. That also leads to feelings of inadequacy/incompetence until strategies to manage it are developed. Even then, nothing is fool proof. I’ll share one little recent example. My real estate agent called. Why was she calling, I enquired. In response, apparently, to my call the previous Tuesday. Me? I called? No, I’d thought about it, but didn’t have time. I was adamant I had not called, maybe one of my neighbours had. Given the topic was a garage door frequently mysteriously opening of it’s own accord, it could have been a neighbour. Well, no. When I checked my phone log, I had indeed called. Brain fog.
I recommend talking to your GP about a referral to a psychologist. Adjusting to being sick is not easy. Having a professional help you work through that emotional adjustment can help ease the stress. Plus, to be frank, you can vent about the whole situation without feeling as if you are driving your family nuts: that alone can be helpful. Ask if you qualify for a Mental Health Care Plan (in Australia) if appropriate.
Exercise is a great way to help manage stress, depending on your current capacity to exercise.
Some things I have done:
- Downsized – I live in a small apartment. Less vacuuming, dusting, floor washing;
- Developed a career change so I can stop sitting;
- Dropped my working hours (although with a new career based around movement I hope I will be able to do more hours, we shall see);
- In my current part-time accounting role, I have a sit-stand desk, which helps immensely;
- Learnt to accept I have a chronic condition – that is perhaps the hardest part, accepting;
- Bought an upright vacuum cleaner so I don’t bend when vacuuming;
- I don’t do all the ironing at once (in truth I do as little ironing as possible at any time);
- I cook a week’s worth of meals on a Sunday so I don’t need to cook after a day at work (slow cookers are great for this in winter). Freeze and build up a variety;
- I plan my activities a week ahead – I never do the grocery shopping and a gym workout on the same day, although I will swim and grocery shop on the same day;
- Make time to look after my body: swim, strength workouts, Pilates, physiotherapy;
- Make sure I get enough good sleep;
- I eat well (most of the time – I’m no saint);
- Resist the ever-present temptation to work when I shouldn’t.
There are some stresses in life we can’t avoid or control. Those we can control, we should.
For our health.
If you have tips and tricks, please share in the comments.
Lifeline Australia can be contacted on 13 11 14 and is a confidential telephone crisis support service available 24/7 from a landline, payphone or mobile.
Disclaimer: The author is not a mental health professional. The concepts discussed above are based in part on personal experience and of a general nature, not tailored for any individual circumstances. Readers should consult their medical practitioner or allied health professional for personalised advice.