Chronic Illness: Dealing with Changes and Winning

Adapted from a talk at the SLE Workshop at Hospital for Special Surgery

Jillian Rose, LMSW
Department of Social Work Programs
Hospital for Special Surgery


When you are diagnosed with a chronic illness such as lupus, welcomed and unwelcomed changes may occur. Our approach and attitudes to adapting to these changes can often determine whether those changes may be to our benefit or to our detriment. Although change may often be challenging for everyone, it provides us with creative and new ways to reach our goals and adapt our lifestyles.

While considering the video, "Who Moved My Cheese", based on the book by best-selling author Spencer Johnson, M.D., we are able to better understand the dynamics of change and how to prepare for it.

What is your "cheese" when living with lupus?

Knowing your "cheese" is as simple as knowing what you want in life and what makes you happy.

  • What do you want out of life?
  • What do you strive for everyday?
  • What is your ultimate goal?

For example, it may be important for you to have good health, energy, peace of mind, as well as good relationships. Once you have decided what makes you happy and what you want in life, you have found your "cheese" and can begin to pursue it! 

What is your "maze" when living with lupus?

Where do we find the things that we want in life? When pursuing the things that make you happy there are often places that we look for them. Your "maze" is what helps you to get to cheese, although it can often be difficult to obtain.

  • How do you obtain your cheese?
  • What do you do in order to achieve what makes you happy?

For good health, one would want to make sure to attend doctor's appointments with their rheumatologist; therefore, your doctor's appointments are your "maze".

Now that the concept of "cheese" and "maze" have been reviewed, Ms. Rose helped us look at how we can use these concepts when approaching changes with lupus.

The four approaches to change through "Who Moved My Cheese"

In the video screened, "Who Moved My Cheese", there are four approaches to change that people often use.

1. When out of cheese, sniff out new cheese and go find it!

  • For some, when we are faced with change we quickly find new ways to pursue what makes us happy and we immediately go to find it.

2. When out of cheese, scurry off to look for new cheese! 

  • This approach consists of setting out to look for your cheese if it has been moved, with no prior planning or thinking.

3. When out of cheese, complain and feel sorry for yourself.

  • When using this approach with change, it often results in no new cheese. Therefore, there are no new ways to obtain what makes us happy or give us what we want in life.

4. When out of cheese, wait a little to see if your cheese will come back, then have the courage to go out in search of new cheese.

  • This is the most effective approach to winning when facing change. When a change occurs that has impacted how we plan to obtain what makes us happy, this approach will help us adapt to change and then go out to find other ways to obtain our cheese.

Themes

During the presentation there were several themes that emerged for the workshop members. These themes included:

Barriers to dealing with change successfully:

  • People did not assess their current method for obtaining their cheese, therefore they were unsuccessful at dealing with change.
  • People did not want to think about change, so change caught them off-guard.
  • People refused to accept that things had changed and needed time, which made it harder for them to adapt in the long run.
  • The people that were unsuccessful approached change with fear; preventing them from adapting to the change.

Dealing with change successfully:

  • People were successful with dealing with change when they maintained a sense of awareness, which allowed them to be prepared for changes on the horizon.
  • People who realized that adapting to change took some time, and were willing to try, moved on more quickly.
  • People who were successful in dealing with change approached change with little fear.

The members of the workshop spoke about the changes they encountered with their lupus and the different approaches they used to cope with change. These themes were seen by members as areas where they could all improve in order to make adapting to changes in their illness more achievable.

One member shared how she had wanted to be able to travel to Europe; however, her lupus and other complications were preventing her from flying. Members in the group discussed that there are other ways to obtain her dream, such as taking a cruise across the Atlantic Ocean. This helped her to explore other ways to obtain her "cheese".

Lupus and Change

Change is inevitable for everyone, but especially for people living with lupus. People with lupus can experience changes that are unexpected.

Often, when comfortable with our lives we stop paying attention to our surroundings and let our guard down, making us more vulnerable to changes we are unprepared for.

If we are unprepared and an unexpected change occurs, these changes can result in grief. This process can be quite burdensome for some. Grief consists of experiencing certain emotions, such as:

  • Surprise
  • Shock
  • Fear
  • Denial
  • Hope
  • Anger

The key is to always be prepared for change. Be sure to enjoy your comfort, but always be prepared. Assess your situation often and be vigilant of warning signs that indicate that there might be a change coming. Attending doctor's appointments regularly and maintaining your treatment plan are just a few ways of being on top of any pending changes in your health.

Being successful at dealing with change

There are certain steps to complete if you are to be successful at dealing with changes.

  • Be ready and willing to deal with the shock of the change.
  • Once the shock has passed, you must be ready to deal with criticism you may face and identify your fear.
  • When you conquer your fear, you have the ability to move beyond it and no longer let it restrict you in how you approach change.
  • It is necessary to imagine what you want and to know what your "cheese" is.

When looking for new "cheese" and ways of obtaining it, be sure to remember that it is a process and it may require working at it. This may take time and persistence as finding new ways to cope with changes may not come immediately and can be difficult when dealing with lupus. Lastly, make sure to not lose sight of your cheese!

What to do when you find new cheese: things to remember

When you have found new ways to obtain what makes you happy in life and you are satisfied with where you are, be sure not to get too comfortable. As mentioned prior, comfort often leads to people reducing their awareness of what is going on around them. This can often result in change being unexpected. 

Although you are content, be sure to continue to keep looking for additional ways to obtain your cheese. Most times there are multiple ways that you can obtain what makes you happy in life. If one of these approaches seems to be working, do not lose sight of the other ways that might be equally successful.

Also, be sure to continue to pay attention to your current ways for obtaining your cheese. It is important to not only be aware of other ways to obtain your cheese. It is equally important to be aware of the limits that your approach may have. Every approach or "maze" to obtaining your cheese has some limits and is prone to change at any time. Being aware can help prepare you for change when it happens.

Most of all, it is important to remember that change is inevitable. Although you must be aware of your cheese, its limitations, and the other ways to ascertain it, you must also remember to enjoy it.

Enjoy your cheese and remember, "A bend in the road is not the end of the road… unless you fail to make the turn."- Unknown.

Learn more about the HSS SLE Workshop, a free support and education group held monthly for people with lupus and their families and friends.

Summary prepared by Jill Orrock, MSW Social Work Intern and SLE Workshop Coordinator.

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