« Chronic Illness and Consumerism »

FreeFoto.comSince it is the holiday season I wanted to share my experience with chronic illness and consumerism. I don't know that I have ever seen this addressed in this way, so hopefully my experience can be helpful to someone out there.

One of the reasons I fell in love with Jeff when we met was his love and care for the outdoors. He was active, loved hiking and camping and was an environmentalist. As the Lupus began to ravage his body more and more it became more and more difficult for him to enjoy the outdoors as he once had; as he still wanted too. Even a small hike could be exhausting. Then once he began peritoneal dialysis (PD) even if he had been physically capable a 4 or 5 hour hike became impossible, because he had to be in a sterile environment every four hours to do dialysis. (PD is a form of daily self-dialysis).

Over time, as the Lupus continued to affect his life and take things away from him, Jeff became more and more materialistic; more and more the consumer. I believe there were several reasons for this. First, he could no longer do the physical activities that he wanted too and which used to occupy his time. Something else had to take the place of those activities. He became interested in having the latest electronics, the newest computer, he wanted an X-Box. The second reason, joined at the hip with the first, is that our society preys on it's members turning even the strongest into mega-consumers. The chronically ill partner is struggling with their identity and can be more vulnerable than normal. We all feel  it "You're not a good person, not worthy, not cool" if you don't t have the latest and the greatest. It is almost hard to avoid. Just think, what did President George W. Bush ask of Americans after 9/11? He asked us to go shopping to preserve the American way of life.

Now, I don't mean to sound all self-righteous and proclaim that I am in no way a consumer, but when families are struck with chronic illness it leaves them vulnerable in ways they've never imagined. And it can wreck havoc on even the most financially secure. Add to prescriptions and medical bills a shopping addiction and you're in some very serious trouble. One thing that most do not know, is that when my late husband died we were about to begin the bankruptcy process. We were over extended.

As the well spouse, I felt bad trying to control Jeff's spending. I felt guilty any time I said no or tried to squash his wants and dreams. Spending was no exception. The anxiety and stress over our finances was wrecking havoc on my health as well. I wasn't sleeping and had begun taking anxiety medication. Jeff was looming towards disability. I think we both saw it, but hadn't yet talk about it. But I was very aware that my job was the top priority, because Jeff could be out of work at any time.

So if you are in this position, just know that it is not uncommon. Again, you are not alone. My next post will include more information on this topic such as resources and tips for the well spouse and the partner.

Comments

[Judy]

I am devouring this site right now for support as the well spouse. It's been a six year roller coaster. I married later, had children later and are now ten and five yrs old. My huband has been disabled from pain for years. We have hit another bump in the road. I have great compassion and strength when he is in a bad way or gently suffering. I have the most difficult time when his aggitation comes through. He is also beginning to forget all that we discuss, snap at the kids (low tolerance), we haven't had any time together in years. On two one hour road trips to get out of the house and town, he spent the whole time on the floor moaning. I have reached a point where I question, not my love, but what this is doing for my children and have found many things wrong with myself this past year when I decided to take care of and find out why I was feeling the way I was. I am doubting the strength we once had. He's a glorified babysitter who sits the kids in front of a tv while i may be working. I have rearranged my life to work at home 90 percent of the time. I leave rarely or take the kids with me as his tolerance level decreases. His agitation increases, patience decreases and our relationship is one passing in the night. I don't know any longer if this is helping anyone, especially him. His depression has gotten the better of him. Our kids bicker and clearly have great resentment aside from the little one but he is getting the shaft as he never did before. I feel numb in the house. I just took a trip to see a relative just before a critical surgery (we lost him) but spent time in a big city where we met and married. He didn't come yet again. He seems to want quiet alone time to do his hobbies but any mention of being apart for a short time to refresh, turns into a big problem. I returned home with a striking realization that he may not be able to heal with us here - our chaos, noise, little bit of life left and no one is happy. The joy is slipping away. we are both in our 40s and I don't know what to do. He can't live on disability and I can't raise two kids and support him outside of the home. I never considered this as an option until returning from a trip to discover the glory of our return lasted thirty minutes. anyone out there feel similar feelings and guilt about them. I see many second marriages in the blogs and wonder if the stats on this are high. I want to have joy back in my life, see it in my children's and he needs to be happy and catch up on life. this again leaves us passing in the night. He has a few hobbies. i can't even get a shower except a few times a week if lucky. He will take time every day to work on the things that make him happy and won't admit it but when i ask for help, i get a passive aggressive comment or attitude for asking and it usually turns into a "discussion" so I no longer ask. I get up and get the kids out and go about finding more and more work as "stuff" seems to appease for a brief moment. Thankfully, I have never cared about anything except a tee shirt and jeans or some sneakers. I am the worst dressed in the family and I am the professional economic support system. I am also the stable one with eggshells surrounding the "non well" spouse and duly noted by the children. I need advice. I need support. I need to figure out what's best for the kids and the husband and lastly myself. I will include myself now. I guess i've come a little way. I would love to have thoughts about this. Thank you for letting me vent.

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