This post concludes my responses to author Danea Horn’s questions. (See Guide Posts and Wake Up Calls if you missed the last one.) When I contemplated her question, “What was the most important support you received?” I was surprised when I realized that it was my from my husband. You would think I’d know that but I’d not been asked this particular question before.
Asking for or receiving help is not easy. It brings up our greatest fears: being judged, being seen as weak, being rejected, being dependent!
As often happens, something I’m thinking about gets a little play in “real life.” I was talking to a friend just a few days ago who has been dealing with extreme fatigue. He confessed that he was feeling so poorly the day before that he could barely muster the strength to feed himself. He didn’t know who to call for help – didn’t think he could ask for help. Tears came to his eyes when I told him that he could call on me if he were to need that kind of help again.
For my friend, and anyone feeling overwhelmed and embarrassed by NEEDING help, I want you to know that feeling weak is not a sign of weakness.
And now, onto the last of Danea’s questions…
What was the most important support you received?
Throughout the active time of my illness, whether relatively healthy or seriously ill, the most import support came from my husband, John. We met about 2 years after I first became ill. My symptoms were somewhere between mild to non-existent, so dating was fine and disclosure was not a pressing issue. Neither one of us remembers when John first learned about my challenges with Crohn’s Disease. Regardless, he never ran from the illness or the care required when basic self-care activities were difficult for me.
Help with Daily Living Activities
Specifically, John provided me much needed physical support, handling everything from grocery shopping to cooking to laundry, taking care of me and my son – and his sons when they visited. On the emotional level, he was patient and understanding. It’s not to say he didn’t feel the stress or become grumpy at times. I just never felt judged by him, not even when we had to cut short vacations or severely curtail our activities.
Basic Errands Were Often Difficult
Even when symptoms were mild I was particularly sensitive to air conditioning. There were many times when a simple shopping trip was interrupted by my sudden need for a bathroom. I often elected to stay in the car so that I could keep my body comfortable and relatively still. Here, too, no complaint, no judgment, just support.
Friends offered the next tier of support, as did my parents and our sons, but it’s the rock-steady assistance from my husband that I rely on the most.
How did you identify what you needed?
How did you ask for it?
It’s impossible to hide Crohn’s symptoms from the people you share a home with. Frequent trips to the bathroom, cramping and chills are hard to disguise. John and I learned together what I needed and when.
When flares were at their worst my diet reverted to bland and easy-to-digest foods. There were 2 recipes in an IBD cookbook that I favored: borscht and chicken soup. Ensure was also an important survival food. Once I learned that these were good foods for me when my digestive track was shot to hell, I asked John to make or get them, or he offered to prepare them.
I was much more stoic and determined at work. It is fair to say that I failed to ask for help when I was still employed. I had a hard time admitting that the normally-reliable-employee Joan was not doing well. It wasn’t until I was too sick to keep working regular hours that I spoke up. Step 4 in Business from Bed is all about asking for help and handling difficult conversations. In this case I would say, “Learn from my mistakes!”
During these times, when my illness overwhelmed my body, my doctors became important allies. I was fortunate in that they knew what I was dealing with and were quite responsive when I needed a medical note to explain my need to work shorter hours or go out on short term disability (STD) leave.
As I was reading this last bit, thinking about my various doctors, I realized that I, too, was an ally in this journey. Although I stubbornly resisted the diagnosis at first, I did seek help when I needed it. I accepted my husband’s support, I learned to adjust my pace and activities when my body required it, and I believed that my medical team would support me.