Receiving a diagnosis of an autoimmune disease is overwhelming. There is so much to take in, especially if you have no knowledge about your diagnosed disease and weren’t expecting it.
While there are many resources available to educate us about our symptoms and treatment options, there aren’t many resources for patients to be made aware of the changes that will at some point or another become an issue in their personal lives.
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#Fibromyalgia and #psoriaticarthritis are more than physically painful. Without proper support and education these #chronicillnesses destroy lives!Tweet
I was caught off guard by the changes that took place in regards to my relationships with others.
As a stay-at-home mother and wife my role was to care for everyone. But that all changed after my body was hijacked by fibromyalgia and psoriatic arthritis.
Who’s the momma?
I received my diagnoses back to back within a three month period. At the time my husband was a truck driver and was away most of the week. This left caring for the kids, pets, and house all on me.
When my pain was low I was able to keep up with the kids and keep the house looking presentable. However, my entire world crumbled whenever I was hit with a severe flare or knocked down for a day or two with extreme fatigue.
The kids are screaming, the dog crapped on the floor, the toilet is overflowing and #chronicpain is holding my body hostage. #momoftheyear #hotmess #chronicmess #chronicmomma #fibromyalgia #autoimmunearthritis #spoonieTweet
During those flares my kids had to feed and care for themselves. I was physically there for them, but I couldn’t do much for them. My expectations of being a doting mother were crushed. Instead, if I flared while my husband was out of town, my kids became my caretakers.
I never felt inferior to my spouse for being a stay-at-home mom. We each had important duties when it came to caring for our family and home. That all changed after chronic pain consumed my body.
Suddenly, we went from splitting duties to having everything fall on my husband. Before my diagnosis, he could relax after returning home from driving all week. That time was spent doing things family fun things. After my diagnosis, his time off was spent doing the house and yard work that I wasn’t able to do while he was away.
I went from looking forward to his return to dreading it. It wasn’t that I didn’t miss him or want him home, but that it was humiliating to have him return home to such a state of disarray.
We thankfully found our groove. To do this we had to stop comparing our family and marriage to others. We had to accept that we were different and learn how to modify our life to make it work for us.
Not everyone is as fortunate. I did a quick search to see what the divorce rates for marriages where at least one partner has a chronic illness was and was horrified at what I saw. One article and study after the next stated that 75% of these unions end in divorce!!! SEVENTY-FIVE PERCENT!!
SEVENTY-FIVE PERCENT of #chronicillness #marriages end in #divorce ! #fibromyalgia #PsA #autoimmunearthritis #chroniclifeTweet
Friends and Family
Friends and family begin to view us as the unreliable one.
We become the one they can’t count on, so they stop asking. They tire of us cancelling, so they stop inviting. They pity and judge us. And instead of learning about our chronic illness and discovering that we aren’t lying when we say there is no cure, they tell us that we aren’t trying hard enough to get better.
This momma ain’t got time for drama! #chroniclife #fibromyalgia #autoimmunearthritis #PsATweet
Hang on to the people who cheer you on and don’t make you feel bad for having a chronic illness. I can’t tell you what to do about the others, but I will say this: If they continuously cause stress and chaos in your life you may need to limit how much time you spend with them or walk away.
What could help a newly diagnosed patient
- A sit down with doctor and spouse to discuss the diagnosis, prognosis, and how it will change their lives.
- A referral and/or list of marriage therapists who specialize and are knowledgeable in chronic pain/illnesses.
- Support groups for the patient and spouse together and individually.
- Support groups for setting boundaries and nurturing healthy supportive relationships.
Thank you for reading part six of this nine part series covering the topics I wish my doctors would have talked to me about when I was first diagnosed with fibromyalgia and psoriatic arthritis.
- 1 Mental Health
- 2 Therapy is Important
- 3 Intimacy Issues
- 4 What is Health Journaling?
- 5 Pain Relief Options
- 6 Relationship Troubles
- 7 Need for Assistance
- 8 Importance of Self-Care
- 9 Keep Moving with a Mobility Aid
- The Cost of Living with Fibromyalgia
- Invasion of the Brain Snatcher! Tips for Dealing with Fibro Fog
- Four Wearable Pain Relief Devices for Fibromyalgia and Arthritis
- Seven Embarrassing Fibromyalgia Symptoms
- F words that describe what it is like to live with Fibromyalgia
- 5 Ways to Reduce Fibromyalgia Pain