There are folks out there who have chronic illnesses, like fibromyalgia, sciatica pain, back pain, rheumatoid arthritis and many other invisible illnesses that plague us, either sometimes or most times. It's frustrating having fibromyalgia, because sometimes I'll go walking around these ponds in my town with my dog. It's a good walk and they even have markers to let you know how many miles you walked. On a good day, I can easily do 2-3 miles. On a bad day, I can't even get out of the house. Some of my friends get confused, and I'm assuming that when I decline on the 3 mile walk, they just think that I'm lazy. I'm not. I just can't do it. Having panic disorder comes in waves as well. So if my heart rate is through the roof and I'm having an extremely difficult time breathing, there's no way I'm gonna do that walk. In colder months, my asthma flares up, and again, the invisibility of these ailments come with a price: disbelief.
This is not a post to make you feel bad for me. This is more about spreading awareness for all people with invisible illnesses, so that others know that maybe the person who pulled up in the handicap parking spot may have heart issues, or emphysema, like my dad had. He didn't get enough oxygen into his lungs to walk that far. When people judge others based on outward appearances, and the "good days" they're having being capable and able, they may want to consider the possible suffering they're going through. Just like when I told you about my therapists who assumed I didn't have "bad anxiety" because I was "put together well" (in their own words) --- that's an assumption based on their patient trying to appear OK. When I walk out of my house, I want to look OK. I don't want people feeling bad for me. Although nobody needs to know your business, sometimes you have to let them know the truth, and become a little more vulnerable, especially to a therapist. Take off the smiling theater mask, let them see you for who you are.
As for friends and strangers who see us out and about, it's frustrating because there's not enough awareness made about chronic illnesses---the invisible types that some people want to keep to themselves. I don't tell half my friends and family what I go through, some know, while others don't. I hate reaching out for help when I need it because it's embarrassing. I want to be capable and able to do anything, but sometimes, there are days when I can't do a damn thing other than hug my dog and pull the covers over my head.
I remember my mom used to say (in her own words, verbatim) --- "Oh when Debbie has a good day, boy is she amazing!"
(Ok, that just made me cry a little.)
My mom knew me inside and out. She understood all of my ailments, and we even chuckled over some of it to lighten it up. She knew how much I wanted to do, and on my good days, she was amazed. Sometimes I was even amazed. When the bad days came, instead of me being her caregiver, she became mine, or at least tried. I told her she didn't have to do anything but just be her wonderful self. She was always so giving and thoughtful. She made me feel valid, and knew how much I struggled with everything. When she became ill, my fibromyalgia flare ups got worse due to my stress and anxiety. It was like my anxiety fed off the pain and the pain fed off the anxiety. It was a vicious cycle that I couldn't break away from. I ended up having the worst insomnia for the years she was ill. I wouldn't go to sleep until 4am, leaving me to wake up later due to exhaustion. My life was on hold and I knew that each night would be a night full of seizures and chronic pain.
Cancelling events, appointments, or a lunch date would leave people feeling as though I didn't care enough about them. Declining invites also made them feel like I didn't want to have anything to do with them. That was not the case at all. And maybe I should've been more honest with them, other than saying, "I don't feel well, can we do it another time?" I thought that was good enough, but in all honesty, it does kinda sound like a crappy excuse. I know most of us don't want others knowing our business, but sometimes, when you really care for the people you are cancelling on, it's important to explain to them what's happening. With complete raw honesty: I'm not very reliable when it comes to "making plans" or keeping an appointment. I try to be, and on good days, I'll be there with a smile.
So my point of this write up is, try to understand when somebody cancels on you, or they let you down in some way. Maybe they're not feeling well and they're embarrassed to let you know. Having an invisible illness (even mental health issues) can be the one secret they don't want others to know about. There's a huge stigma on both types unfortunately. The more awareness that is made, the more understanding and knowledge that comes with accepting others as who they are, not who we think they are.
And always know, it's OKAY to not be OKAY. Just do your best every single day, and if your best is just getting up to shower, then you've accomplished a lot.
What is Invisible Illness?
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