Receiving chronic illness diagnosis is enough to send anyone into an emotional mess. As if that wasn’t not enough, the chronic illness itself can change the biochemical makeup of the mood control centre in your brain which can affect a your moods and lead to depression and/or anxiety. That is exactly what happened to me and why I am also taking medication to help with depression and anxiety.
Fear of Sickness
The immune system in those with chronic illness may be overactive and instead of attacking infections the chronic illness immune system wastes time and energy fighting the body’s own organs, joints, nerves, and/or muscles. This is exactly what is happening in my body right now.
Like many people with chronic illness, I am on medicines to suppress my overactive immune systems. Consequently, I need to avoid being around sick people. A minor cold in a healthy person could progress to a dangerous infection in someone with chronic illness. I have canceled plans with friends after learning that they are sick. Some thought I was being a little too paranoid. They don’t understand that the last time I caught a cold, I ended up in the hospital and I almost died. Anyone who lives through that will be terrified of it happening again.
The wait/search for a diagnosis
My endocrinologist has confirmed that I most likely have a second autoimmune illness. She has given me a referral to another medical expert whose job will be to diagnose this second illness. The waiting game is difficult. Not knowing what this second illness is supposed to be can be terrifying. My first autoimmune illness is incurable. What if this one is deadly? The uncertainty is difficult to bear.
Change in family dynamics
When a person is diagnosed with an incurable chronic illness it all the people who love that person that are affected.
I can’t do everything that I used to be able to do.
I used to push the family to do outdoor activities, such as geocaching (my favourite activity). I haven’t been able to do that in a year. I miss it. We go to parks and I sit on a bench while the rest of the family plays.
Household responsibilities are falling more onto my fiancé, because there are days I can’t do any chores at all and other days when only doing the dishes will end in extreme pain in my lower limbs. My chore list may be long, but my ability to do them all has disappeared with my health. I feel extremely guilty that I’m no longer doing my part. I sometime over do it, because I am stubborn and don’t want to feel disabled.
Physical and emotional exhaustion is also a common symptom in chronic illness and in many cases it is severe, often debilitating. Those with chronic illness will often have to “pay the price” for engaging in an activity and then require days, weeks, or even months of recovery. I went out to lunch with some coworkers last Thursday and couldn’t walk and was covered in fresh bruises Friday and was in pain and unable to do chores or participate in any activities all weekend.
Right now, I am lucky. My boss is understanding. His wife also suffers from an autoimmune illness. He understand the struggle. I still worry that all the missed time for medical appointments, the bad pain days, brain fog, the work from home days, the sick days, will eventually lead me to unemployment. I also worry that my health will continue to deteriorate and I will be forced to take long term sick leave. I can’t afford loosing my job or falling onto sick leave and getting much less in salary than before. I have three kids who depend on us, house payments, car payments, etc.
The struggle to deal with symptoms and perform simple daily tasks alone takes a toll on a person. I experience severe pain, including headaches, joint pain, muscle pain and nerve pain. I fight daily to be able to understand my body, my triggers and to do things others take for granted. It can be very frustrating. It does take a toll on your mentality,I have break down every once in a while but it’s healthy to let everything out at times.
“It’s not just pain. It’s a complete physical, mental and emotional assault on your body.” – Jamie Wingo