10 ways to maintain a sense of Control with a chronic illness

It’s easier to cope with chronic illness if you feel that you have some control over your life and your health. Feeling that everything is just spinning away from you makes life more difficult. Here are my first and best so far ideas. More suggestions are always welcome for a list like this. Please leave them in the comments. We all love to hear tips. With chronic illness you are forced to be your health manager so it is up to you to gather information and to make better decisions. You need to learn skills for this complex task as you go along, because the days of good health and no worries are behind you, though there is always the hope of having them return. As you go along you will find a management style you are comfortable with. The first suggestion I would make is to join an online group or community.  They can be a great source of information and encouragement.  It’s harder to find a physical real-time group than one that is on-line. It is also easier to spare the time for online efforts. Yahoo has a more old-school type of healthcare support group e.g. RA-Support and ra-factor are 2 of thousands.  People get to know one another well over the years.  Then there are “boards” like Rheumamisfits or Sjogrens World that offer a consistent group with all kinds of experience and advice.

On Twitter it is easy to become part of the #rheum, #chronic or #spoonie community. Also blogs like RA Warrior and numerous others can be sources of support and information. As you become comfortable with a group they can often act as cheerleaders and encourage and inform you and of course you can encourage others also.Number 2 on the list is educate yourself.  Start small and learn the vocabulary of your specific problem. Then start learning more details. It makes a lot of difference if you know what the options are likely to be before you are faced with them. That helps you to stay in the front seat, even when you are not the driver.

#3  Start now to collect tips about good doctors, clinics, possible treatments and other types of health care professionals who may be able to help you if not now, maybe in a few years. They’re much  easier to find when you have kept track.

#4 This one is purely practical. Try to build up a small surplus of your most essential medications.  Every time you forget to take one put it in your “extra” vial.  You never know what can happen – hurricane, earthquake, pharmacy fire.  You don’t want to be desperate and running out of medication makes you feel you have no control.

#5 I suggest you journal or blog. I did a post about it here so if it attracts you as an idea you can see the reasoning and read a paper about what it can do for you.

#6  It’s good to feel that you always have a possible “move” or plan that can improve the way things are going for you.  Whether I’m waiting to see how a new treatment works before going on to the next, or just still have pain treatment possibility that I don’t always use or need, I feel much more in control if I have a strategy that may help if things get worse. For instance in the pain area I have a TENS machine as well as alternate pain pills that I don’t use very often. This means that I can often treat my own pain safely and go to the doctor less often.  Also I don’t feel backed into a corner.

#7  It’s worth being open to trying different ideas. In my case, though I feel that medication is in general working for me I would consider trying massage, acupuncture, change of diet, specific exercise and so on.  There is little I rule out completely except things with no proof at all or that sound to good to be true

#8 It’s good to feel that you can control and improve at something/anything.  For instance there are many brain exercises free on line.  One is Beat the Chimp.  Getting through the sudoku or crosswords every day is another example of control as is any creative and fulfilling experience you engage in, including crafts and puzzles.

Ayumi the Chimp always beats me

#9 You can take a leaf out of Neil Pasricha’s book and start your own Book of Awesome.  There are many things in people’s lives that can lead to small moments of joy.  Open up a folder on your desktop and find a happy picture every day to put in it, if you can’t find things any other way.

#10  Pets can keep you going when nothing else helps.  They need you.

Dolly in her Liberace Coat

I read a scientific paper called Dispositional optimism and coping with Pain that discusses how your conviction about having control helps you to to deal with stressful experiences.  Here is a quote from it: “When analyzing the course of psychological processes of coping with pain, attention should be drawn to the factors which may support an individual in their efforts to reduce sensations or get control over stressful experiences. One of such factors is an individual’s conviction about having control over what happens in life or about the ability to influence and change the course of events” (bolding by me)

I refound this paper when putting this post together, so here is the scientific basis to my conviction that control will help with chronic disease.  All the best to you in your own efforts.

Anet has had rheumatoid arthritis for 30 years. She spent the last 20 working full time in market research. Now health advocacy and the quality of life with chronic illness are major interests. “It’s great to have time to blog and tweet and go out for lunch”. Follow her on Twitter @anetto

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