Living Well: Painful Changes

Living Well: Painful Changes

I have a cherished friend who is going through a very tough time. She is in her early 70’s and is suffering from the pain, fatigue and medical complexities of rheumatoid arthritis. She was unwell for many years before getting a diagnosis and it has been a challenge for her to find a balance with her medications and lifestyle.

Statistika_razvodov_v_rossii1Recently she told me she had made the difficult decision to end her decades-long marriage, a union that has produced 3 grown children and 10 grandchildren.

In trying to understand her choice and be a friend to her during this transition, I shared her story with two other trusted friends, both physicians and both experienced in treating patients with chronic pain resulting from disease.

Interestingly, each made the same observation. They said when they’ve had a pain patient who decides to leave a marriage, almost invariably the patient’s health improves once the transition is made. They observed that it seems to be easier to be sick alone, than to be sick in an unsupportive or destructive relationship.

Usually there are problems before the onset of illness, but once pain and illness begin to define one’s life differently, things that were once tolerable may become intolerable and sometimes that means leaving a marriage. As my friend said to me, “I would rather be alone than feel alone with somebody.”

What has struck me is how the people in my friend’s life seldom take into account the everyday reality of her illness and how it affects her needs, her choices and her behavior.

For example, her husband tells mutual friends that he was happy in the marriage and that she is just depressed, so that’s the problem. To my knowledge he has not looked for valid cause for her to be depressed, or tried to ascertain how his own behavior may have factored into her feelings and decisions.

After hearing him comment about depression one too many times, she said to him, “Of course I’m depressed, I am sick and I am unable to fix my marriage. Who wouldn’t be depressed?”

She is a person who has served a consistent, traditional role in her family. Her job has been to cook the meals, run the household and keep the kids on track. Her husband travelled for a living and enjoyed having fun with his kids when home.

Now in her 70’s and suffering constant pain, she is still expected to take care of the others, to carry the load of cooking for holidays, watch over the grandkids and allow everyone to have a good time.

I keep telling her, “They should be waiting on you. You should come in the door, be shown to a lounge chair and handed a nice drink.”

I don’t think they have seen her illness as a reason for the traditional family roles to change and she hasn’t been adept at teaching them.

She has a large circle of loyal friends, myself included, and lately some have expressed concern about the clarity of her thinking. They observe that she repeats herself sometimes and has a hard time remembering details, but they don’t attribute this to her illness or note that she’s probably not sleeping well due to constant stress and pain.

She is a sick person and in crisis, her medications are being adjusted and she is still not sure what will work.

I know from my own pain experience that a foggy brain is part of the challenge at the best of times, and becomes more of a challenge in the worst of times.

I’m not writing about this to assign blame, and my friend would be the first to acknowledge she has much to learn about taking better care of herself and setting boundaries for others. I am trying to say that when people live with constant pain, it affects every aspect of their lives and they must make choices to maximize their chances of gaining some comfort.

If we are to support them, we must always take the reality of illness into account. Illness both forces them to make different choices and influences how they might feel about those choices. Nothing happens outside the context of illness and pain, nothing.

Sharing this time with my friend, and observing all that she is going through has been a lesson for me that I hope I can remember. It’s been a lesson in having empathy for those who suffer and in reserving judgment for those who haven’t experienced the same trials.

It has reminded me that each individual lives within a unique, holistic frame and if I am to be a friend, I must try to see that frame and understand the boundaries it creates.

Joy Selak

Joy Selak

Joy Selak lives in Austin, TX. She has been diagnosed with Interstitial Cystitis, Fibromyalgia, Mixed Connective Tissue Disease and Trigeminal Neuralgia.

Her book, You Don’t LOOK Sick! Living Well with Invisible Chronic Illness, takes readers through the four phases of chronic illness experience — Getting Sick, Being Sick, Grief and Acceptance, and Living Well.

Joy has two websites, Joy Writes and Chronic Invisible Illness. Her blog is Living Well with Dr. Joy. She also has a Facebook page.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Joy Selak, Columnist

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Melissa, so glad you are finding support from our book, that was our hope. And Deb Jean, so sorry you don’t feel arms around you during this frightening time.

Melisa H.

Joy! Currently reading your book! Your insights are priceless and this article really hit home for me. I’ve had 5 back surgeries and little support from significant other. Depression combined with physical pain can be overwhelming. Thanks for letting us, your readers, into your life !

deb jean

I am having hip surgery next week and asked my husband of 33 years, could he come up to the hospital in the mornings on his way to work and on his way home as I will have limited mobility and will be dependent on others. What time he asked grudgingly, not even a gleam of concern in his eyes. He later asked if we could drop his car off at the repair shop on the way to the hospital the day of my frightening (to me) surgery, as if I wont have anything else on my mind.
He totally didn’t get it and I totally don’t want him to even be there now. I would rather be alone and he doesn’t even realize it, nor does he get it.