Posts tagged ‘family’

February 10th, 2011

Guest Post: February, Family, and Friends

by Amanda

Today’s post is a wonderful Guest Post (and must-read!) by Health Activist Julia Olenik blogger at the awesome blog Reasonably Well. In her guest post she shares her experience with that third relationship conflict mentioned in our theme: your condition vs. your family (and friends). Julia offers real, honest advice and I know you’re going to enjoy reading this as much as I did. –Amanda


February, Family, and Friends

The month of February brings with it several interesting events; one being Groundhog day, when it’s so gratifying to anticipate the end of winter. Another is Super Bowl Sunday and the best excuse ever to gather in large boisterous crowds in front of huge televisions while consuming large quantities of really-bad-for-you snacks.

But my favorite day by far in February is Valentine’s Day. Why? Well, gifts of chocolate in heart shaped boxes from a wonderful hubby for many years are very, very good things. But aside from chowing down on a serious amount of high quality candy, Valentine’s day also is a great time to for me to take time to appreciate not only my marriage, but all the relationships with others around me.

When I think about my relationships, mostly I think about how fortunate I am to have these special folks around me, especially since autoimmune disease entered my life. My ties with my family and friends were certainly tested during the early days of my diagnosis. I am incredibly thankful that these vital bonds survived, and eventually flourished. But it wasn’t an easy process.

Seven years ago, I was diagnosed with Sjogren’s syndrome, and my life changed in ways that I would never have imagined. I wish that I could say that I accepted these changes with grace, but I didn’t. No, I became crabby and very self-centered. Not that I didn’t deserve to be a bit cranky: Sjogren’s brought with it bone-crunching fatigue, joint pain, the classic dry eyes and dry mouth. It also took away my job and several of my hobbies.

I was not a happy camper.

As I struggled to adjust to the enormous changes that my body was making, I became aware that my social circle was changing, too. Several friends that I had considered close began to just……fade away. My family and closest friends often looked at me with puzzlement and concern. They didn’t know what to make of me, and I didn’t know what to make of me, either. It was a difficult time, and I knew that if my ties with my loved ones were to survive, I needed to look to the wisdom and experiences of others who had successfully made this journey before me.

I found a helpful perspective from another woman dealing with chronic illness in the book A Delicate Balance: Living Successfully With Chronic Illness, (Perseus Publishing, 2000, pg. 191) In it, author Susan Milstrey Wells dove headlong into these same issues. She discussed the many ways that chronic illness may impact all of our relationships – those as a spouse, a child, a sibling, a parent, a co-worker, and as a friend. She summed up her experiences by saying:

Continue reading after the jump… read more »

January 12th, 2011

Tough Questions, Health Activist Answers: “What if my family doesn’t believe my pain?”

by Amanda

In our Community, a recent tough topic has sparked an enlightening conversation. The inspiration for this discussion is the idea of physical pain, a side effect and sometimes a symptom of many health conditions. What if your loved ones don’t believe your pain? What do you do when others are dismissive of your pain?

Here is what a few Health Activists, many of whom talk daily about living with chronic or extreme physical pain, had to say:

Amy proposed the question and her 5 steps of advice in her blog post:

What do we do when our family or loved ones are not supportive of our illness? What can we do when we feel our pain is dismissed or not believed?

  1. Treat them like you would like to be treated.
  2. Share with them stories of others who deal with your health condition.
  3. Make self-care a priority.
  4. Surround yourself with people who understand.
  5. Learn about who you are as a human “being.”

Ellen, who also spoke on this topic, notes:

Not only is pain the body’s sign to you that something is not right, it also is a very powerful motivator.  Pain’s job is to tell you to fix what is wrong, move away, avoid the painful stimulus.  When this is impossible pain can become overwhelming to the system. Depression is a frequent co-morbidity of chronic pain.  Even when outright depression isn’t a factor, desperation is like a shadow that follows these patients. I often find community members write in my groups or to me personally complaining that their families don’t understand.  I find it really difficult to know what to say to them.  I try to tell them that they are not alone.  I try to help them find outlets, even if that means giving my personal email information so they have someone to vent to.

Dianne adds:

Don’t forget to support yourself. Be very patient with yourself. …Just focus on the minute by minute. Give yourself kudos for small accomplishments instead of requiring yourself to achieve major goals in order to feel that you’ve made progress.

Barbara offers:

I look upon every thing that I do that helps to easy my pain even a little as a great victory over my chronic illness. I also found  that handling my responsibilities as a wife and mother in small increments gives me a sense of victory. If it takes days to clean a closet, that is okay. For when the job is done I can laugh and feel good about what I have accomplished.

But what do YOU think? Have you dealt with this in your own life? What course of action did you take to address this?

If someone in your community is struggling with being “believed” and “understood” by family members or friends – what do you tell them? Are there any resources you have to share on this topic?

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