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For most of our lives, we picture our marriage – or really our wedding. We think of the dress, church, flowers and tiara/veil. When planning a wedding we think of food, drink, music and table seating. Funny, how we don’t picture marriage – a wedding is about 5 hours – the rest is for life.
We said for Better or Worse. We meant our vows. We kissed to seal the deal. I would have married my husband at a hot dog stand with a beer in my hand. It didn’t matter where or when; but it did matter why. I love him; I want to spend the rest of my life with him; no matter what.
Well, The What came.
Marriage, parenting, friendships and family are all important and integral parts of our lives. When an Invisible Illness invades this precious space it causes chaos, frustration, anger, exhaustion, pity, love and support. In order for these relationships to be cultivated we may need (and welcome) outside resources.
Here are some of the resources I have found invaluable:
Phylors Blog
Hibernation Now
Two Pain Patients
Life in the Undiagnosed Lane
Patients for a Moment
Chronic Babes
My husband felt few resources were applicable to him. He also doesn’t have a lot the free time to research all the options online. So, I thought I would seek Cyber World assistance. The site Two Pain Patients has wonderful content. She is both a Painie and married to one.
The article Marriage & Disability brought many interesting comments; raw, personal and touching in content. Please add any comments, resources or article suggestions, the more resources available to everyone in a Painie’s life is essential. As, many don’t feel comfortable venting to the Painie, having a place to vent might be pretty important. They may also feel extreme guilt about venting, as they are not the ones physically suffering. However, that doesn’t mean they are not suffering too.
For those with children, are there any resources you have used or found helpful in the past? Are there sites for children of Painies? For those who have a Painie Child – please read Life in the Undiagnosed Lane – the author is a young person struggling with an Undiagnosed Invisible Illness. I know for myself watching my child in pain would be about 1,000 times worse than me being in pain. How do you handle that? As a Painie Parent – how do you reconcile that your child does not know you prior to pain?
Caring for the sick is a stressful, tiring and sometimes thankless job. Those who do so, need help – whether it be emotional, physical or knowledge based. Constructive, helpful and empathetic channels to navigate the family and friends through life of a Painie, are essential.
Please click here to add any further comments, suggestions, resources, article ideas and resources.
Chronic Pain Journal 
Very nice post. I will come back to this one. I wish my adult son had resources to help him understand about loving someone, esp., a parent who has a chronic illness and also about the stigma of invisible illness. Sometimes it seems like his social worker (he has a disability) doesn’t believe what she/he/they can’t see. I tell them I need help (basically doing what they get paid to do) and they act like it is not any different than a healthy working married person asking. I kind of think it is different.
I often wonder if most of the people I know who have CFS or fibro were married before they got sick. I wonder too if most single women over 40 who are living with chronic illness figure the future is dim as far as having a partner.
Thanks for the post! Your blog is very nice.
Peace and well wishes,
Dogkisses.